![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 928 to 952 of 1085. Go back in thread:
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
Posted by Nikki B. on March 13, 2004, at 7:04:37
In reply to Re: topomax and voice changes » Nikki B., posted by headachequeen on March 12, 2004, at 14:43:23
Your last message really made me think, and if the Doc. agrees I am going to try Topamx. As you pointed out, I take 4-6 Aspirin a day and it is ripping my insides apart! Thank you very much for your advice.
Posted by headachequeen on March 13, 2004, at 14:46:07
In reply to Re: Hair loss » kka, posted by katia on March 13, 2004, at 6:32:04
> Hi,
> I was just wondering about your experience with hair loss. When do you notice it greatest?
Katia, I notice it when I check the screen thing (wow... and I have been teaching English as in vocabulary enhancement and creative writing, not to mention as a second language, for years and claim to be a writer and journalist.... "Screen thing???????") in the drain after I wash my hair...
there is always hair trapped in the screen...
of course, I no longer use a hairbrush as the 'radical style' I decided would better state my today persona, whoever or whatever that is, does not require a brush and all my life I have hated cleaning hairbrushes...
expecially when I let my hair grow extremely long and had to find a way to unravel the hair from the bristles of the brushes...
so my new question is, which came first the hair loss, or the hair loss caused by Topomax and Tegretol... and if it is caused by the meds, which med is most at fault...
I am not losing any more hair than before and actually less than when I used a brush to style and otherwise batter my hair into place...
I never really thought about it until I learned that Tegretol could cause hair loss...
Yoicks screeched I: I am losing my hair... look at it there in the brush...
then I changed to this delightfully different style and I noticed the hair in the drain screen that keeps things from plugging the drain...which used to require a plumber's attention every few months because of the hair caught in it ...
so has anything really changed?
Or am I simply reacting to the learned fear????
I am taking steps to create healthier hair now...
I have no bald patches, other than the ones where I tear out hair when the work in progress does not progress... and that I cannot blame on medications as it is strictly my own fault for not sticking to any sort of proper schedule...
I have constant compliments on my hair... even from stylists I don't know and no one tells me the sky is falling in or my hair is falling out...
so I think that I can safely say that I do not at this time feel any great fear about loss of hair because of Topomax...
the amount of hair that I have noticed to have fallen out in the past three weeks would not compare with that that came out in my brush each day if I were to do an honest comparison...
I simply allowed myself to be frightened by a possible side-effect...
it frightened me into improving my diet to include foods and supplements that would increase hair health... the ones that Dr. Bob recycled to the alternative health site <g>...
so that is good...
I do not find hair on the pillowcase or on my clothing to any greater extent than before Topomax or for that matter before Tegretol and I have been on that longer and it is also a hair destroyer...
so.... I hope that helps...btw... my hair is a deep red and my bedspread is a creamy ivory so if there were a great fall-out the hair would show up intensely...
as I wear a lot of deep purple and dark blues and olive drab, the hair would show up on my clothes too...
Now, dog hair there is in abundance, but it is longer than mine as a rule so we can tell the difference, and either black or a different shade of red, if not cinammon... so there is no confusion there...As for some of the other side effects, I have weighed aspirin and other over-the-counter pain killers vs Topomax as a choice for migraine control and found that Topomax with its constant controls (my doctors and the ongoing monitoring) to be a safer avenue to follow...
now that is MY choice and my path
There are other choices out there that might work for others to manage migraines... I have tried several...one of the famous and most-advertised over-the-counter pain meds is really hard on the liver, and as I was often prescribed two of its not-available-over-the-counter levels I have been told not to take it at all any more, regardless of reason or need because of the risk to my liver and kidneys... funny that no one told me that earlier as in before the damage could start...
I was taking it to counteract pain from injury and the orthopaedist treating me went into shock when he found out how long I had been on it... for migraine, for post-op pain in three instances that I could remember and so on... in fact in one case, while still on a morphine pump, I was given two tablets of this particular medication with another similar med, every three hours... if the morphine wouldn't do it, then what was this stuff supposed to do? says he, attack your liver faster...Over the years in the battle against migraine I have been prescribed stuff that I was to stick under my tongue when I felt a migraine coming on... great plan except by the time I feel a migraine 'coming on', it is full-blown and here... no warnings at all... besides the little green tablets made me so ill that the migraine was actually a relief...
then there were the prescription pain-killers that were supposed to knock me out within seconds... right! They didn't do anything of the sort... the label said to take one for pain, if it didn't work then to take another in four hours...
two of those things meant forty-eight to sixty h ours without sleep; my eyes wouldn't even close. The head-ache went on, the pain didn't stop and I was like a wind-up toy that was overwound... insult to injury...
the efforts to prevent and to cure and to stop the pain went on and on... the greatest success being a trip to the hospital for a shot of demerol or some such delight... sometimes for an overnight stay while nurses ran IVs to manage the pain...
I did not want it managed; I wanted it to go away and to go away NOW...
dim light - any sound - the slightest movement - agony... and they wanted to manage the pain...
Topomax has stopped all that for over a year...Along the way it has somehow boosted the efforts of the Tegretol to manage the epileptic seizures...
wonderdrug? I think so...
I still have the abdominal pain and the nausea that started with the Tegretol, so I still take the meds to control that... the Topomax is not that wonderful <sigh>
I still have the 'tingling' (oh the understatement) that came with the Tegretol... the electric shocks in my hands and feet that start and will not stop, that sometimes make it almost impossible to use my hands... but it could be worse some people have the tingling in their faces...I do not have the number of seizures though... so that is a bonus...
and I am not as often struggling to overcome the depression that I think accompanies all this...
maybe it is independent of it... I don't know...
the psychologist says I don't need him...
the doctor is tearing his hair out at that ... see Topomax does cause hair loss LOL...
the shrink says I am hypomanic and require long-term psychotherapy...
me? I don't know, I just know I do not have migraines and I have only the occasional seizure since Topomax and I have minor hair loss...all in all it is really not all that bad...
and I think I am healthier for all the water I drink....kat who does not work for the company that makes Topomax...<gg>
Posted by rockette on March 13, 2004, at 16:09:51
In reply to Re: topomax and voice changes, posted by headachequeen on March 13, 2004, at 14:46:07
wow--did you even take a breath during that post?
I'm already sold on Topamax for migraines but you would have convinced me! I'm just trying to find the right dose that will stop 3 or 4 migraines a week and NOT make me lose more hair. I was losing hair way before I found this site and the warnings so I know it's not my imagination or pschosomatic or whatever!! I, too, have tried every little pill created for migraine and then some. Have to take Protonix for the stomach thanks to many of the previous meds. Diet, biofeedback, exercise, meditation--you name it, tried it. BTW--Demerol will CAUSE more headaches than it cures--I won't let anyone ever give me a shot of that again.
Posted by headachequeen on March 13, 2004, at 18:07:38
In reply to Re: topomax and hair loss, posted by rockette on March 13, 2004, at 16:09:51
> wow--did you even take a breath during that post?
LOL I am not sure if I did... but then, all that music training means that I am supposed to have great breath control...
> I'm already sold on Topamax for migraines but you would have convinced me! I'm just trying to find the right dose that will stop 3 or 4 migraines a week and NOT make me lose more hair.Start on a low dose and continue with it for a couple of weeks and work up to the next increment when you are ready and not before...
the schedule I was given to follow instructed me to start in the evenings... somehow I missed the evening part and the first few days on the stuff I was sooooooooo ill... went back and read the sheet before calling the pharmacist to see if any of the other meds would be interacting badly with topomax and there it was (in bold-faced type at that) EVENING... so I made the switch and the problems ended...
with the tegretol I started out on 100 mg twice a day... no easy increments there, it had to start and it had to start right then; a month later they upped the ante because things weren't changing quickly enough... and the side effects were right in the game, matching each bet as it came along so my doctor presecribed the Serc and the other thing whose name I forget, to counteract the nausea and dizziness and the abdominal pain -- there were times when I really felt that maybe I would rather risk the seizures escalating...the slow increments of Topomax seem to control the side effects...
and when one encounters a side effect that is a problem, it often seems that back-tracking to the previous dose for a while helps to deal with it...
not always but often...>I was losing hair way before I found this site and the warnings so I know it's not my imagination or pschosomatic or whatever!!
No one would ever think it was in your imagination and I hope you don't think that I was suggesting that.. I know that my reaction to my own apparent hair loss was over-reaction to what I had learned about the two meds... and to my sheer hatred of Tegretol <g> but the hair loss from some of these meds is the same as the weight gain from some of them...
if I had a quarter for every time I heard that the weight I had gained was because of my life-style... no one would accept the reality that the anti-depressants were playing a role in what was happening to me... had to be because I was sitting around doing nothing and eating junk food all day...
right, sports fans... working full time times two, running agility, tracking, doing obedience and doing dog shows, training, grooming, and otherwise caring for five or six dogs...
right there is enough exercise to put the lie to that idea... but it had to be me who was at fault...
for that matter I have been told that I have to be causing my seizures and that if I think positively they will not happen -- and have had people tell me that if I were a stronger personality (now there is a laugh) I would be able to overcome the migraines too... they are fortunate that I am a strong personality as I am able to overcome the urge to strangle them when the urge hits...These symptoms/side-effects are real...
just as the tingling and nausea and abdominal pain and kidney damage threat-- and the list is endless are real...
but there are ways to battle them... we just have to find them, so that we can enjoy the peace and comfort the medication provides...
I simply allowed myself to be convinced that the natural hair loss was a side effect...and interestingly enough, with the cut-back in Tegretol to 200 mg twice a day from double that amount, there is less hair fall-out -- with the wondrous Tegretol which I find is moderated in many ways by the Topomax, at least for me, there are worse side effects... my experience there of course; others will argue the case.
At that point I was losing hair and losing it drastically...no bald patches but lots of hair loss and as it was longer I really was able to notice it...
funny how we females focus on the hair loss problem...
vanity, thy name is woman and thy image is hair...<s>I do think that if you check out the information that is posted on the other site and try some of the vitamins and supplements (topomax destroys them) you will find help...
>>> I, too, have tried every little pill created for migraine and then some. Have to take Protonix for the stomach thanks to many of the previous meds. Diet, biofeedback, exercise, meditation--you name it, tried it. BTW--Demerol will CAUSE more headaches than it cures--I won't let anyone ever give me a shot of that again.
and here I thought it was just another of those redhead things... because it never seemed to work for me, which is why they would keep me and put me on IV ... useless stuff that demerol...
kat
Posted by Sooshi on March 13, 2004, at 18:42:58
In reply to Re: Hair loss » kka, posted by katia on March 13, 2004, at 6:32:04
Hi Katia,
When I was losing my hair on Depakote, I noticed it most when I was taking a shower, running my hands through my hair after conditioning...it would come out in thick strands; and then afterwards as I combed it out...it would literally fill up my comb (I use a large tooth comb insted of a brush, to cut down on breakage). Eventually, hair started to show up on my pillow, seat of my car, my shirts, etc. (My hair is very fine, but thick and long). At first, I wasn't sure it was really happening. I thought...my hair must be extra dry and it's breaking off, or...I've always lost this much and have just never noticed it before..... Finally it became very apparent on my head that it was thinning out...it just wouldn't hang the way it used to anymore.Anyway, just thought I'd mention it to ya.
Posted by Sooshi on March 13, 2004, at 19:01:11
In reply to Re: Hair loss » katia, posted by Sooshi on March 13, 2004, at 18:42:58
Finally began tapering off Topa, and will begin Zonegran, hopefully avoiding a few of the nasty side effects I'm getting from Topa. Pdoc wants me pretty much off T before starting Z...I don't know why I couldn't at some point take them concurrently...tapering down T while titrating up Z??, maybe at the 25-50mg Topa mark??
I'm wondering if I should taper the T as slowly as I titrated up? I take 200mg, and he said to cut out 50mg in the am for one week, then 50mg the next, and so on. Well, I titrated up at 25mgs per week, but he said the tapering should go alot smoother than the titrating up did. I cut out my first 50mg this am and feel no difference so far today.
Any advice would be appreciated!
Posted by katia on March 13, 2004, at 19:53:21
In reply to Re: Hair loss » katia, posted by Sooshi on March 13, 2004, at 18:42:58
> Hi Katia,
> When I was losing my hair on Depakote, I noticed it most when I was taking a shower, running my hands through my hair after conditioning...it would come out in thick strands; and then afterwards as I combed it out...it would literally fill up my comb (I use a large tooth comb insted of a brush, to cut down on breakage). Eventually, hair started to show up on my pillow, seat of my car, my shirts, etc. (My hair is very fine, but thick and long). At first, I wasn't sure it was really happening. I thought...my hair must be extra dry and it's breaking off, or...I've always lost this much and have just never noticed it before..... Finally it became very apparent on my head that it was thinning out...it just wouldn't hang the way it used to anymore.
>
> Anyway, just thought I'd mention it to ya.
How awful! It's sounds like my experience. Did it grow back or stop falling out? I've started taking biotin and selenium and using dandruff shampoo for the selnium in that. Oh, this is terrible. I don't know what's causing it. This is one of my best assests!
thanks for your input.
Katia
Posted by Patient on March 14, 2004, at 14:51:57
In reply to Re: Hair loss » Sooshi, posted by katia on March 13, 2004, at 19:53:21
Hi,
I worried about the possibility of hair loss/and or hair changes when I considered taking the mood stabiliser Depakote. I've been taking 500mg for over a month now, along with 40mg Celexa. So far no hair or weight problems. From what I understand, drugs such as Topomax and Depakote, as well as others, can create hormonal imbalances, resulting in dry skin, hair loss, weight gain, lethargy,and disruption of menstrual cycle, hoarse voice and slow speech, tingling in hands, and constipation.
So, wary that this could happen, I decided to take a supplement called Thyroid Caps from Solaray-a thyroxin-free supplement which contains iodine, magnesium, zinc, copper, manganese, molybdenum, thyroid substance (thyroxin free), and L-tyrosine amino acid. I take this product about three times a week, not daily as suggested. I take this hopefully to counterbalance any possible disruption of thyroid function. I also take a vitamin B-complex 50mg ratio-important for health and growth of hair. Also, extra biotin, inositol, and methylsulfonylmethane (MSM), which aids in the manufacture of keratin protein. And, vitamin C with biofavinoids, vitamin E, and zinc. Essential fatty acids are important as well, such as flaxseed, primrose, or salmon oil. I try to eat more vegatables and fruits, though this isn't difficult for I enjoy these, especially homegrown produce.
You might consider having your thyroid-stimulating hormone (TSH) tested, and for a more accurate picture of thyroid function-a test measuring the level of free thyroxine (T4)-the latter test is especially helpful if the pituitary gland isn't functioning normally, which in turn affects thyroid function. I think anyone taking Topomax or Depakote should have at least a TSH test done annually, or try the treatment options mentioned and if improvement is seen (can take a few months), then this could indicate thryoid disfunction.
I agree with the information found in the following link about taking an oral preparation to replace the deficient thyroid hormone-avoid synthetic thyroid hormone such as Synthroid--dessicated (dried) thyroid glandular is the better choice (such as Armour).
Posted by Sooshi on March 14, 2004, at 15:32:53
In reply to Re: Hair loss » Sooshi, posted by katia on March 13, 2004, at 19:53:21
As I've said before, I tried EVERYTHING, including having my thyroid levels checked (always normal), all the over-priced "hair-loss" shampoos and treatments, including Rogaine, mega-doses of Biotin, selenium, zinc, C, keratin, etc. etc. and nothing stopped the hair loss until I stopped taking the Depakote. I was taking over 1200mg of Depakote...don't know if that mattered or not.
Yes, thank goodness, it is growing back! It looks so funny, because I lost most of it at my temples, and now I have "wings" again! (if you were in highschool in the 70's, you know what I mean!) My hair is my best asset too...almost down to my waist, and I had to cut it up to the middle of my back, and then up to my shoulders after I lost so much, it got so thin and strangly!
No hair loss with Topa, though, and I only stayed on the Biotin 2000mg (for hair loss, anyway).
Posted by kka on March 15, 2004, at 11:36:04
In reply to Re: Hair loss » kka, posted by katia on March 13, 2004, at 6:32:04
> Hi Katia
I mainly notice the hair loss in my brushes and a major overall thiness to my hair. I didn't have very thick hair to begin with but I would really never really have to clean a brush that often of hair, now I must do it every other dayYOu can now see my scalp where my hair parts. I wear it long too and am so worried. I guess I will have to stop. I am also on Wellbutrin too, I am so freaked out I am going to quit that too. and just stick with my Anti-depress. I take all the vitamins everyone has mentioned on this board, and have for a long time but lately nothing is working.
You mentioned that you noticed it with a drug holiday - do you mean when you took a break from Topamax that you noticed a hair loss. Also why would I have to tirate down off Topamax, why can't I just quit taking it?? Anyone know? I haven't taken it for two days and I don't feel sick or anything. I just want my thickness back, I know this is so vain, but it is terrible to lose so much hair. Does anyone know about it growing back??
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
Posted by headachequeen on March 15, 2004, at 13:36:24
In reply to Re: Hair loss » katia, posted by kka on March 15, 2004, at 11:36:04
> Also why would I have to tirate down off Topamax, why can't I just quit taking it??
I think it may depend upon the reason one is taking Topomax...
for instance if one is taking it as an AED, then suddenly stopping the use of it will cause the seizures to start again... not a pleasant thought...kat
Posted by Patient on March 15, 2004, at 13:45:45
In reply to Re: Hair loss » katia, posted by Sooshi on March 14, 2004, at 15:32:53
Hi,
I am not trying to counteract what you have said, but, I did want to mention that many times TSH tests and other thyroid tests can come back normal even though the thryoid isn't working as it should. This is truer if the pituitary gland is not functioning normally as well. Many of these drugs-mood stabilisers and antidepressants-affect the endocrine system in one way or another by the way they alter monoamines-it can have a cascade effect in the body resulting in all sorts of side effects.
If anyone is experiencing hair loss or voice changes (as was mentioned above), it can be a good indicator as to something going wrong with the thyroid-in spite of normal thyroid tests. A few months on a dessicated thyroid glandular with positive results can be the best way to know whether or not there is a thyroid problem. Results can take a few months, not a few weeks. If one has to stay on a certain medicine causing hair loss, it's worth a try. I would still take the suggested vitamin and mineral supplements as well. They are all needed for a healthy endocrine system.
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