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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 916 to 940 of 1085. Go back in thread:
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.
Posted by headachequeen on March 11, 2004, at 15:30:33
In reply to Re: Starting on Topomax for Migraines. Advice anyone?, posted by rockette on March 11, 2004, at 15:17:12
> 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.
Now this part is scary...
As I mentioned, my sister-n-law who has beautifully healthy hair, and has maintained the most incredibly slim and wonderful weight level even though she has been off the topomax for a year or so now, was on the medication for a few years before I ever heard of it...
I have been on it now for thirteen-and-a-half months.
I have been forgetting the biotin and vitamins...
forgot to renew them when I ran out... not the cognitive skills, just not thinking when I was at the store... and find some hair in the drain thing when I shampoo but my hair (before I put the stuff in it that makes it stand up on edge <g>) is relatively healthy... of course by the time I get ready to wash it the next day it is dry and awful but I think that is the paste and clay and wax that moulds it into the shape it is supposed to hold not anything the drugs do...
and I cannot judge on the Topomax either as Tegretol has the same effect...
all AED meds have the same effect...for that matter a young man who is a hair stylist and I must find out where he works!!! stopped me today to tell me how much he enjoys seeing my hair because the way I wear it always has this joyous appeal ... it looks so happy and uplifting... so the time spent in front of a mirror with various pots of goo and the frustration are worth it ...
I guess???? and it can't be falling out to badly...
but I am not in the two year time period yet...
although I need to take quite a bit more than 150 mg...
so now I start to chew my nails and wonder...
and there is the 400 mg of Tegretol a day attacking my hair as well...
hmmm maybe it is time to stop with the clean hair fetish...
stop washing it daily....
kat
Posted by rockette on March 11, 2004, at 15:41:55
In reply to Re: topomax and voice changes » rockette, posted by headachequeen on March 11, 2004, at 15:30:33
> > 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.
>
>
> Now this part is scary...
> As I mentioned, my sister-n-law who has beautifully healthy hair, and has maintained the most incredibly slim and wonderful weight level even though she has been off the topomax for a year or so now, was on the medication for a few years before I ever heard of it...
> I have been on it now for thirteen-and-a-half months.
> I have been forgetting the biotin and vitamins...
> forgot to renew them when I ran out... not the cognitive skills, just not thinking when I was at the store... and find some hair in the drain thing when I shampoo but my hair (before I put the stuff in it that makes it stand up on edge <g>) is relatively healthy... of course by the time I get ready to wash it the next day it is dry and awful but I think that is the paste and clay and wax that moulds it into the shape it is supposed to hold not anything the drugs do...
> and I cannot judge on the Topomax either as Tegretol has the same effect...
> all AED meds have the same effect...
>
> for that matter a young man who is a hair stylist and I must find out where he works!!! stopped me today to tell me how much he enjoys seeing my hair because the way I wear it always has this joyous appeal ... it looks so happy and uplifting... so the time spent in front of a mirror with various pots of goo and the frustration are worth it ...
> I guess???? and it can't be falling out to badly...
> but I am not in the two year time period yet...
> although I need to take quite a bit more than 150 mg...
> so now I start to chew my nails and wonder...
> and there is the 400 mg of Tegretol a day attacking my hair as well...
> hmmm maybe it is time to stop with the clean hair fetish...
> stop washing it daily....
> katTo: Headachequeen--
I STOPPED washing my hair every day just recently since my hair had become so dry. The extra oils from a days wait have helped with styling. I too, use styling gel and hair spray but am trying to use less as that is very drying also. I spray ona liquid conditioner (Pantene) between shampoos as it makes the hair softer and easier to comb thru without breaking. I tried using several teaspoons of baking soda in a cup of warm water to rinse out the "gunk". It helped...will use it again if I notice a build-up.Don't want to lose my hair but am not willing to have daily migraines either.....>rockette
Posted by headachequeen on March 11, 2004, at 17:48:04
In reply to Re: topomax and voice changes (to headachequeen, posted by rockette on March 11, 2004, at 15:41:55
between shampoos as it makes the hair softer and easier to comb thru without breaking. I tried using several teaspoons of baking soda in a cup of warm water to rinse out the "gunk". It helped...will use it again if I notice a build-up.
>
> Don't want to lose my hair but am not willing to have daily migraines either.....>rockette
>Oh, heavens... I am a redhead... and have thick coarse hair... as redheads tend to have... another of those 'redhead things'...
and the style I choose to wear requires anything but soft and manageable.. good thing too because my hair is stubborn, another redhead thing because most redheads of my acquaintance are stubborn <s>
the style I have chosen for the past while (I told my stylist I was tired of calm and dignified and wanted radical and radical I got...
requires that my hair be rather strong and stand-uppish so it needs the wax and paste and clay and modelling clay and a little bit of anything that will keep it from doing what it wants to do... at the end of the day it feels like really coarse straw... the stuff we use in the kennels outdoors in winter actually, in fact a little coarse and drier...
So if Topomax and Tegretol are drying my hair and attacking it from within, heaven knows what I am doing from within...
shall try to find the spray conditioner you mention... and I am using a really great conditioner , a leave-in one that I use for the dogs... when I rinse out all this stuff at bed time, I spray in masses of this stuff and work it through and then offer all sorts of offerings to the oriental hair gods... and all the other gods and goddesses of the hair world... there must be some out there surely? if not I shall invent some...they have all sorts of delightful little gods and goddesses in the oriental shops and I buy them to decorate the dog room and the grooming room and the kennel office... one of them MUST be for hair...
kat
Posted by Nikki B. on March 12, 2004, at 14:18:56
In reply to Re: Starting on Topomax for Migraines. Advice anyone?, posted by Sooshi on January 16, 2004, at 10:52:47
Thank you all for your feed back. And if I decide to give this a try I know I will be back often seeking advice!
Posted by headachequeen on March 12, 2004, at 14:43:23
In reply to Re: Starting on Topomax for Migraines. Advice anyone?, posted by Nikki B. on March 12, 2004, at 14:18:56
> Thank you all for your feed back. And if I decide to give this a try I know I will be back often seeking advice!
I think the best suggestion anyone can make is to try it... the relief from the head-aches is wonderful...
then to deal with side effects as and IF they occur...
Making a decision based on what might or might not happen is really not going to be too helpful...I know that if I had made a decision on whether or not to try using Topomax based on someone else's experiences or fears, I would still be somewhere out there having three or four seizures a week, sometimes two a night...
while I know that my seizures are not as bad as those others have... they are seizures and as such something I can do without...
and the Topomax has made a huge difference...
I just looked back over the diary I keep...
and the year before I started taking Topomax is littered with records of seizures...
the year after shows a whole eight months without...
then there were a couple and then none and then a couple sort of thing...
there have been a few of late... something not quite adjusted and that will be settled soon I hope...
but the migraines are gone...
and that is wonderful...
at least I have only one of the two to deal with...
the hair problem is minor...
and as my hair stylist said yesterday --- went in and asked her about my hair specifically then checked with another one --- the hair loss I am seeing is normal... and I am over-reacting because of what I have read and heard...
both of them told me to relax...
one told me I needed a trim actually LOLApparently Aspirin causes more problems than Topomax and problems that can be life-threatening according to reports that have been released in the past year or so and yet we keep taking them for everything from head-ache to sore throats...
the experts say that if the aspirin were discovered today it would be available by prescription only yet people are not worried about it half as much as we worry about Topomax which is monitored by our doctors... blood tests and so on... follow-ups....
If the migraines are really a problem, then why not take a deep breath, try Topomax with your doctor monitoring your progress?
as long as you have that follow-up then you should be okay...
makes more sense than buying more asa ....
at least to me...
kat
Posted by kka on March 12, 2004, at 17:56:31
In reply to Re: topomax and voice changes » Nikki B., posted by headachequeen on March 12, 2004, at 14:43:23
I started Topamax the end of October and I have finally worked my way up to 175 mgs twice a day on Topamax and am about to increase to 200 2x per day and I am really noticing the hair loss and thinning to a point where I may have to stop. Has anyone noticed the increased hair loss with increased dosage?
Is this a "start up" side effect to increasing dosage? This is a question for long term Topamax users - does the hair loss stop after you have been on Topamax at the higher does or does it continue on???Like for example --- I was on Acutance for a long time which had some terrible side effects (like thinning hair, red eyes, headaches,) but there all were just in the beginning and then went away and it was a miracle drug.
Other than the hair loss, slowly working my way up to the 200 mgs has been a breeze!! No problems at all! Please post your experiences, thanks in advance!
Posted by katia on March 13, 2004, at 6:32:04
In reply to Hair loss, posted by kka on March 12, 2004, at 17:56:31
Hi,
I was just wondering about your experience with hair loss. When do you notice it greatest? On your bedspread? On your hands when you run your fingers thru' it during conditioning? I feel like I"m losing mine. and soo much of it comes out in the shower - which BTW I wash my hair once every 4-5 days. I've just noticed an increase in my hands when running my fingers thru my long lustrous beautiful hair in the shower during conditioning!@!!! I'm upset.!
I take triletpal and wellbutrin but this was happening way before this. It was happening when I chose to take a drug holiday is when it happened most.
and you?
KAtia
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