![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 909 to 933 of 1085. Go back in thread:
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!!
Posted by headachequeen on March 6, 2004, at 17:26:35
In reply to HAIR LOSS--HELP needed, posted by rockette on March 6, 2004, at 14:22:33
> 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!
First a reminder that we lose hair in the daily round anyway...
secondly, you are not taking enough biotin...
thirdly, you have to add a general vitamin/mineral supplement as the topomax depletes the vitamins and minerals like a wildfire going through parts of California...
then for your hair you have to add vitamin E (400 IU or even 800 IU) as well as zinc (10 mcg if memory serves although I use 25 mcg as I can never find the 10) so that the system takes in the vitamin E...
this will help the hair loss...
and thank the vets who over the years have helped me learn to deal with hair problems with my dogs...
and thank Murph from this list who clued us into the vitamin loss...
and I would suggest taking megadoses of vitamin C as well...
kat who has just started back up the ladder toward another 100 mg of topomax having had two seizures in the past few nights...
really these things are not amusing
Posted by Dr. Bob on March 8, 2004, at 9:02:07
In reply to Re: topomax and voice changes » rockette, posted by headachequeen on March 6, 2004, at 17:26:35
> secondly, you are not taking enough biotin...
> thirdly, you have to add a general vitamin/mineral supplement...I'd like to redirect follow-ups regarding alternative treatments to Psycho-Babble Alternative. Here's a link:
http://www.dr-bob.org/babble/alter/20040225/msgs/321991.html
Thanks,
Bob
Posted by Herspirit on March 9, 2004, at 5:31:40
In reply to Re: topomax » PoohBear, posted by headachequeen on February 26, 2004, at 18:16:20
I've been drinking on the average of 64 oz. of water a day for about two weeks now and my eyes are just as bad - blurry and dry. I will keep drinking the water because I know I need it but I sure was hoping it would help my eyes. I will see what the opthalmologist says on the 22nd.
> 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 NIkki B. on March 10, 2004, at 10:55:17
In reply to Re: Starting on Topomax for Migraines. Advice anyone? » inky, posted by migraine sufferer on January 14, 2004, at 0:38:51
HI! I an 27 and have been suffering with migraines since age 9. As all migraine sufferers know, you allow yourself to become a guinea pig in order to find relief. My Doc. has recently suggested Topomax as an option. Before I make this decision I want to research this as much as possible. This has been the most helpful site thus far, so I thank all of you in aiding me make this difficult decision. These side effects sound very serious, andI just don't know if the benefit out weighs the side effects. Then on the other hand I would try almost anything to be free or at least decrease my daily headaches. It sounds like if you stick with it the side effects will decrease, is this true? I believe I am willing to go through this for the end result. I guess my biggest fear is I will go through all this and still have migraines. My next fear is the feeling of being "stupid." I work 2 jobs 50-60hrs/wk and am a mammographer. I cannot afford to be "stupid" while helping in the diagnosis of Breast Ca. On the other hand being "doped" up on pain med's everyday can't be too good either! As you can tell I am very torn on this. I guess my questions are for people on Topomax for migraines only and not on any other med's for other illnesses. The ULTIMATE question is have you had any migraine relief at all? Do the cognitive side effects decrease with time? Can you drink alcohol and if you do what happens? I am also 5'2 and 109lbs. If I lose 4-6lbs I'll be fine, but I would not want to lose much more than that. Well, thank you all for listening to me babble and I would appreciate any feedback ASAP.
Posted by headachequeen on March 11, 2004, at 14:37:39
In reply to Re: Starting on Topomax for Migraines. Advice anyone?, posted by NIkki B. on March 10, 2004, at 10:55:17
> HI! I an 27 and have been suffering with migraines since age 9. As all migraine sufferers know, you allow yourself to become a guinea pig in order to find relief. My Doc. has recently suggested Topomax as an option. Before I make this decision I want to research this as much as possible. This has been the most helpful site thus far, so I thank all of you in aiding me make this difficult decision. These side effects sound very serious, andI just don't know if the benefit out weighs the side effects. Then on the other hand I would try almost anything to be free or at least decrease my daily headaches. It sounds like if you stick with it the side effects will decrease, is this true? I believe I am willing to go through this for the end result. I guess my biggest fear is I will go through all this and still have migraines. My next fear is the feeling of being "stupid." I work 2 jobs 50-60hrs/wk and am a mammographer. I cannot afford to be "stupid" while helping in the diagnosis of Breast Ca. On the other hand being "doped" up on pain med's everyday can't be too good either! As you can tell I am very torn on this. I guess my questions are for people on Topomax for migraines only and not on any other med's for other illnesses. The ULTIMATE question is have you had any migraine relief at all? Do the cognitive side effects decrease with time? Can you drink alcohol and if you do what happens? I am also 5'2 and 109lbs. If I lose 4-6lbs I'll be fine, but I would not want to lose much more than that. Well, thank you all for listening to me babble and I would appreciate any feedback ASAP.
Nikki B, I have been taking Topomax for over a year now and am on a fairly high dose of it. One of the reasons it was prescribed was its effect on migraines -- something it had not occurred to me to discuss with my neurologist... and they say that Topomax has an effect on cognitive skills??? I was already in trouble long before the Topomax!!! <s>
The poster on the wall of his waiting room made me realise that I should ask him for help when I was in for a regular follow-up about the epilepsy... and when I asked he snapped at me because I had never mentioned the head-aches before... well, in my defence, he had never asked, either...
I have suffered from migraine since I was fourteen and probably earlier... but I remember one incredible experience with a migraine shortly after my fourteenth birthday and my mother sending me to bed with a cup of tea that tasted awful.. she had put a dram of whisky in it... when I woke up the head-ache was past but the memory of that awful tasting tea lingered and I attributed it to the effects of the head-ache for years lol
hence the memory of that particular one...
as I had asked about migraine treatment, the neurologist put me on Topomax instead of increasing the Tegretol (I never thought I would be grateful for the migraines!) at a low dose of the Topomax with a schedule that increased at slow increments over a period of months until I am now taking 600 mg a day part in the morning and part in the evening...
the head-aches are a thing of the past and have been since I started taking the Topomax...
the seizures have also lessened in their frequency although they have not stopped altogether, hence the recent increase to the 600 mg mark as I will NOT agree to taking an increase in the Tegretol
-- there are side-effects to the Topomax, I would never dispute that fact, but the side-effects to Tegretol are much worse ** in my experience **
so I prefer to have the Tegretol, although my doctors tell me it is only a secondary medication for the seizures...if you are put on Topomax,take it in slow increments over a longer period of time than seems to happen in too many cases
I started at 25 mg each evening for two weeks, increasing to 50 mg each evening with the proviso that I drop back to 25 mg if I found that the increase was too soon...
and with each increase that followed the same proviso was attached, I was to increase at my own speed and comfort level...
and it worked...
I have encountered no real loss of cognitive skills... and any other side-effects have been dealt with and overcome... often with help and suggestions from people here who have met and dealt with them before me, otherwise with suggestions from the doctors or the pharmacists...
or my sister-in-law who was on Topomax for a few years before I ever knew it existed...
the one thing I do recommend is that you make it a point to drink lots of water so as to avoid kidney damage as your kidneys try to flush out the strange presence in your system...
kat
Posted by rockette on March 11, 2004, at 15:17:12
In reply to Re: Starting on Topomax for Migraines. Advice anyone?, posted by NIkki B. on March 10, 2004, at 10:55:17
Topamax for my migraines has worked wonderfully for the past 2 years. Again I started with 25mg and gradually increased to 150mg (I have never had seizures)I also take Wellbutrin twice a day for migraines. I did lose over 40 pounds last year but was also dieting on purpose (Weight Watchers) so not sure if meds influenced weight loss or not. At first Topamx left my hands tingling. I get tinnitus (ringing in my ears) but not sure which med causes that.
I only got upset when the hair started to fall out! (Noticed it mostly at first when it would come out in my hands while shampooing---now I can see where it used to be on my head.) It's been several months now of talking Biotin and magnesium and the hair isn't worse but not any better either.
I gradually dropped the Topamax back to 25 mg/day and am now getting several headaches a week (yesterday was particularly nasty!!) Am seeing my doc in 2 weeks so we'll see what's next.
I use AMERGE when I get a migraine and it has really worked well. MOST of the time the headache is gone within 2 hours.
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