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Dr. Bob is Robert Hsiung, MD,
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Posted by rockette on May 17, 2004, at 3:47:11
In reply to Re: Topamax Experiences?, posted by imlaurie on May 16, 2004, at 23:19:51
I lost almost 50 lbs in less than 6 months about a year ago. Everyone thought I was "too thin" then. (168-120) I had no appetite for the longest time. I take Topamax for migraines and the maximum dosage I had taken was 175 mg. After 125 mg. my hair starts to get very dry and brittle and eventually I lose some. Over this winter I decreased my dosage,(down to 25mg at one point but the headaches came back--ouch!!) got my hair back in shape(lots of conditioning treatments, extra vitamins and Biotin but it helped tremendously--not the same as before but lots better) BUT...I've gained 10 pounds that will not come off and my skinny summer clothes of last year don't fit. I'm back up to 125 mg Topamax for about 6 weeks now. No weight or appetite change---maybe Topamax only works the first time???
Posted by sjb on May 17, 2004, at 13:28:27
In reply to Re: Topamax Experiences?, posted by rockette on May 17, 2004, at 3:47:11
It only worked for me the first time also.
Posted by headachequeen on May 17, 2004, at 14:12:29
In reply to Re: Topamax Experiences?, posted by sjb on May 17, 2004, at 13:28:27
> It only worked for me the first time also.
I find this very interesting as I know of people who took Topomax and then quit taking it because they did not like having to give up the occasional (or in one case the frequent)use of alcohol required to safely and comfortably use it... and none of these people has regained an interest in food... all of them are like me, living on the one-meal-a-day plan...
I know that I shall be using it for the rest of my life as I need it to moderate the seizures and moderate the migraines... still migraine-free and loving it <G>... and it does have some effect on the tegretol as with Topomax I have fewer 'break-through seizures' than on tegretol alone... know it because I tried going without the topomax for a month and it was sheer hell without the stuff but I had to know...
AND the pins and needles so-called in my hands and feet were much worse as was the abdominal pain and the nausea that comes with the tegretol... which my neurologist insists is a topomax side effect; he refuses to accept the idea that tegretol can have side effects... duh, where has he been hiding for the last heaven-knows-how-many years? There are all sorts of documented side effects for Tegretol, many of which are identical to those accredited to Topomax and in my experience were worse than any I suffered with Topomax... they seemed to be lessened when I started taking the topomax as well...
the tegretol had no effect on the migraines, that is for sure and did nothing about the weight gain that accompanied my depression... a vicious circle.. between eating because it was a comfort thing, and the medications causing weight gain and eating because I was depressed by the weight gain and then gaining weight because the meds were increased to combat the increased depression because of the increased weight gain.... you know the pattern I am sure...Today I saw my regular physician who is almost as ecstatic as I am about my weight and size... and who pointed out that when one likes one's self and feels good about that same self that there is a whole different approach to life and being.. and it is so true...
I feel like the person I used to be... and come to think of it, I am beginning to look like her too... and I like her again...
Come to think of it, I look younger, although I am going to have to change hair styles, sigh... this one does not work with the change in weight... and I like it so well too...
but not enough to gain weight for it LOLHowever, I digress... the writer coming back to me ... sorry!!!
There are people I know who were taking this med before I knew it existed and they are still finding the weight control effects working... even though they are not using it...Different attitudes? Different metabolisms??? Different personalities??? Different feelings coming to the fore???
wish there were someone with the answers because I really would like to know....
kat
Posted by headachequeen on May 17, 2004, at 18:41:52
In reply to Re: Topamax Experiences?, posted by imlaurie on May 16, 2004, at 23:19:51
> I lost almost 50 pounds taking Topamax. I lost it so fast it made my head spin. I guess it was in a three month period but it seemed much quicker.
You know, I have been thinking about this and I really have to envy you... it has taken me a year or more to take off the weight...
I was so happy the first week to lose the three pounds; to me, that meant the stuff really did have a weight loss side effect and I was excited at the prospect of losing a few pounds.
Then as time went on I lost a few more pounds with each increment, as my appetite decreased or my interest in food was suppressed or whatever happened until now I seldom want to really eat.
Once in a while though I have days when food really appeals. Does anyone else have days like that?
Friday we were shooting pool, a new interest -- I have always been interested only in things that I can do better than most people and pool does NOT fit that category!-- and suddenly I decided that I wanted to have something to eat. Usually physical activity replaces any interest in food. We ordered fish and chips -- the orders came with brocolli and cauliflower and baby carrots while the usual 'chips' were replaced with chunks of potato that were baked or roasted or something (I am not a cook, something that does not interest me <g>) and really good... and I ate a large lunch a meal which, like breakfast, I generally ignore...
then around six I wanted baked potatoes and sour cream with steak and in that order...
two meals in the same day is unusual in the extreme. Saturday for lunch, after a morning of garage sales, we stopped for scrambled eggs with bacon and maple syrup soaked ham and home-fried chunks of potato!!!! then I wan't hungry again until this evening...
strange patterns indeed...
and finally soda pop has become boring... doesn't taste right... ginger ale is all right but Pepsi doesn't taste right... it has taken a year but I have arrived at that point...
Some mornings coffee doesn't taste or smell right either...
arrgghhhh that is hitting below the belt!!!!!but the weight loss to date has occurred over sixteen months with the occasional hiatus when I thought it had stopped
kat
Posted by shadows721 on May 18, 2004, at 0:03:56
In reply to headachequeen » imlaurie, posted by headachequeen on May 17, 2004, at 18:41:52
I am so glad that all of you have posted on your experiences with topamax. I stayed on it, because I found out the side effects I have were normal. I am on only 15mg of topamax. I felt like I was poisoned for the 1st 2 weeks. I had a horrible taste in my mouth, severe thirst, constipation, and major heart burn. I had a sore throat too. 7-up tastes like alka selzer. YUCK!!! I had to take it every 2 days then every other day to every day. I know it's crazy. I read how some of you are on 100 or 175 and I am like, "WOW!"
Oh, I forgot to mention - I have the stupids too. I can't remember things. I am always saying now, "Go and get that thing." "You know what I am saying that thing a mah jig." My family is like, "What happened to her mind?" But having the stupids isn't so bad, because I don't worry like I use too. I don't worry, because I can't remember what I was worrying about now. LOL
Personally, I haven't dropped weight, but that's not my purpose for the med. I am on the med for tremors. But, I can see where I could drop the weight, because of that odd hint of a taste that feels its in the back of my throat. I tend to avoid foods and it's easy to pass things up, because of that odd taste thingy.
What I am amazed to say and afraid to say too quickly is that my libido and sexual abilities have increased. I have actually had an orgasms again. Talk about a shock of a life time! I thought all was a wash with the Lexapro. This is odd. Maybe it's just a coincidence. I don't know, but I am not arguing with it:-}
Oh, I also have a severe case of hypervigiliance to the point I see things moving. That's not happening as bad either. I think this is a great med. I just had to hang in there with the side effect just like lexapro.
Posted by imlaurie on May 18, 2004, at 7:49:37
In reply to Re: low dose topamax, posted by shadows721 on May 18, 2004, at 0:03:56
The "stupids" hmmmm. Yes I have them too. I had them before being on meds(part of getting older) but I do admit they are much worse with the Topamax. My kids, who are all grown, look at me as if I have Alzheimers. I am 51. It poses a problem at times and other times it can be funny.
Please explain to me about the things moving? I think I may have that but never mentioned it as I was afraid to.
Posted by stacylouisabeus on May 18, 2004, at 8:00:44
In reply to headachequeen » imlaurie, posted by headachequeen on May 17, 2004, at 18:41:52
please tell me if you lost more than 50? I thought by summer I would have~ but I haven't lost anything for awhile. I really need to, like another 100 lbs.
Thank you
Stacy
Posted by imlaurie on May 18, 2004, at 8:56:08
In reply to Re: headachequeen » headachequeen, posted by stacylouisabeus on May 18, 2004, at 8:00:44
I lost abot 50 pounds I surely wouldn't have wanted to lose anymore then that. It put me at about 114. I was putting weights in my pockets when I went to the doctor because I didn't want her to take me off of the Topamax. One time I was going to put weights in my shoes, lucky I didn't because she took my shoes off, lol. A couple of weeks ago they put me on Seroquel also and I noticed I am eating a lot more. I haven't weighed myself yet but I don't want to be 160 pounds again for sure. Somewhere on a website I saw the percentage of body weight that you lose on Topamax and it was pretty high, I can't remember how high exactly. If I find the site I will send it to you.
Posted by stacylouisabeus on May 18, 2004, at 9:17:05
In reply to Re: headachequeen, posted by imlaurie on May 18, 2004, at 8:56:08
Thank you so much! When I was in high school I wayed 125 and everybody thought I looked like I came from a concentration camp. I have never liked eating but couldn't figure out why I cant lose weight especially if I dont eat much. Has your hair thinned out?
Posted by imlaurie on May 18, 2004, at 10:05:16
In reply to Re: headachequeen, posted by stacylouisabeus on May 18, 2004, at 9:17:05
I have been on Topamax for a year and the hair thinning has just started about 2 months ago. I am also on Synthroid for a thyroid condition and that causes hair to fall out also. I used to take Evening Primrose Oil but now I think it doesn't mix with some of my meds.I need to go to a drug/herb interaction site to check it out again. It really works well with hair fallout after about two weeks of taking it. My hair is now coming out in globs, scaring the **** out of me! I am actually afraid to wash it.
Have you had your thyroid checked? Why are you on Topamax? Headaches? Just curious if you don't mind me asking
Posted by headachequeen on May 18, 2004, at 13:20:05
In reply to Re: headachequeen » headachequeen, posted by stacylouisabeus on May 18, 2004, at 8:00:44
> please tell me if you lost more than 50? I thought by summer I would have~ but I haven't lost anything for awhile. I really need to, like another 100 lbs.
> Thank you
> StacyI have lost over sixty pounds... not something I really want to admit to actually :(
kat
Posted by headachequeen on May 18, 2004, at 16:47:00
In reply to Re: headachequeen, posted by imlaurie on May 18, 2004, at 8:56:08
> I lost abot 50 pounds I surely wouldn't have wanted to lose anymore then that. It put me at about 114. I was putting weights in my pockets when I went to the doctor because I didn't want her to take me off of the Topamax. One time I was going to put weights in my shoes, lucky I didn't because she took my shoes off, lol. A couple of weeks ago they put me on Seroquel also and I noticed I am eating a lot more. I haven't weighed myself yet but I don't want to be 160 pounds again for sure. Somewhere on a website I saw the percentage of body weight that you lose on Topamax and it was pretty high, I can't remember how high exactly. If I find the site I will send it to you.
Oh, this brings back memories LOL
There was a time when they were trying so hard to help me to gain weight... when I was married I was the same height I am now, 5'6", but I weighed all of 96 or 97 pounds (when I went into hospital to have my first daughter the nurses were so patronising, told me to come back in a few months, after all it took nine months to have a baby and just because my doctor told me I was pregnant, it didn't mean I would have the baby right away. I would have to wait the same time as everyone else... I weighed all of 124 and still could tuck in my blouse and looked totally ordinary... I was in a panic that they would not let me stay <g>
My doctor was so sorry that I 'had to have this baby'.. said I finally looked human!!!!!
made me feel great, let me tell you :{
Eventually they decided it was time that I do something about this weight problem. Every week I had to go to the dietitian at the hospital and she would go over my week's eating record and I would have to be weighed.. I would wear almost everything I owned in hopes that I would be able to get past the ordeal by scales...
far cry from the time when I would go into paroxysms of terror at the sight of a scale!!!!
Her office was in the basement of the hospital and sooooooo cold... she would insist that I remove the layers of clothing once she caught on to the ruse.... sighNow I look back to the time when I thought 160 was a really great weight to have reached as an accomplishment in lowering my weight... how things change...
I would not consider coming of Topomax... first for the headache consideration... life without migraine is sheer heaven ... and then for the weight consideration...
still not losing hair now that I have the vitamin and biotin cocktail sorted out...
and everything else seems to be working too...but I do worry about returning to being just more than a walking skeleton again....
kat who I guess is never happy
Posted by rockette on May 18, 2004, at 18:00:29
In reply to Re: low dose topamax, posted by imlaurie on May 18, 2004, at 7:49:37
I had the "stupids" when I first started Topamax but that wore off after several months. I blamed it on "over 50" but it really was the Topamax, I'm sure!! Also dry mouth and tingly hands---you really do need to drink a lot more water with this med.
If anyone has the site or recipe for the "hairloss vitamin cocktail" could you reprint it??? thanks
Posted by headachequeen on May 18, 2004, at 18:32:27
In reply to Re: low dose topamax, posted by shadows721 on May 18, 2004, at 0:03:56
> I am so glad that all of you have posted on your experiences with topamax. I stayed on it, because I found out the side effects I have were normal. I am on only 15mg of topamax. I felt like I was poisoned for the 1st 2 weeks. I had a horrible taste in my mouth, severe thirst, constipation, and major heart burn. I had a sore throat too. 7-up tastes like alka selzer. YUCK!!! I had to take it every 2 days then every other day to every day. I know it's crazy. I read how some of you are on 100 or 175 and I am like, "WOW!"
Have you talked to your doctor about the heart burn and constipation? I have severe side effects from the tegretol... and, yes, I KNOW that the side effects are from the tegretol and not the topomax as they started before I began to take the topomax...
among the side effects are severe abdominal pain, nausea, heartburn, extreme tingling in hands and feet, and I am always thirsty... well that is related to the diabetic thing too but as my weight is down my sugars are down too so I think that the diabetic component is gone now...
my doctor prescribed Losec and Serc for the problems... all but the tingling disappeared...
when I went to see the neurologist a month ago in hopes he would substitute for the wretched tegretol, he prescribed dom-pereden I think it is called. have to check the spelling to counteract these side effects... now there is a catch to it... it does cause similar side effects in some people... and I was furious...
but finally tried it... was going to just stop taking the tegretol but when I tried that the break through seizures started with a crash ... poor old topomax could not fend them off alone...
so back to the dom peri whatsis...
it takes care of the tingling too...
tingling??? more like electric shocks...so ask your doctor if he or she cannot do something to help ease the reaction...
as for the after taste or whatever, I have not experienced that...
I simply have no interest in food... for instance, today I had a burger around two o'clock... and won't want anything to eat until some time tomorrow ... as I have to go for more surgery on my eye tomorrow afternoon and will be unable to open my mouth more than a little, anything more than a small bit of yoghurt will be out of the question for a few days, so today was the condemned man's thick meal LOL
but it is a disinterest in food, not a change in taste that is caused by the topomax...
and that really helps...
when I was on the gee I feel sorry for me let's eat the walls thing, taste did not matter
kat
Posted by stacylouisabeus on May 18, 2004, at 18:38:21
In reply to Re: headachequeen, posted by imlaurie on May 18, 2004, at 10:05:16
It is for a combination of reasons. A mood stabilizer for being manic, and to help lose weight because I had gained a disgusting amount of weight from being insulin resistant. Nobody knew what the deal was with me. I was often told to push away from the table and walk. I never ate in the first place which made my insulin worse. The less I ate the more I gained. I cant even tell you how many times I have had my thyroid checked.
Posted by imlaurie on May 18, 2004, at 19:59:07
In reply to Re: headachequeen, posted by stacylouisabeus on May 18, 2004, at 18:38:21
I also am on it as a mood stabilizer.
I am very interested in this "Vitamin Cocktail" that was mentioned before to stop this horrid hair loss. Being slim is nice but being bald and skinny...
Posted by stacylouisabeus on May 18, 2004, at 23:29:21
In reply to Re: headachequeen, posted by imlaurie on May 18, 2004, at 19:59:07
I totally agree~ maybe we could trade wigs?! Just kidding because I am a hairdresser that used to have thick hair. Not anymore. Everyone was saying I did too much coloring that was why it was falling out~ but I know better.
Posted by Simoncat on May 19, 2004, at 20:33:08
In reply to Re: Topamax Experiences?, posted by imlaurie on May 16, 2004, at 23:19:51
> I lost almost 50 pounds taking Topamax. I lost it so fast it made my head spin. I guess it was in a three month period but it seemed much quicker. I only took 100 mgs a day for the first few months. Then I started taking only 50 mgs. I am on it for Bi-Polar II disorder. I started out at 160 and am now 116. All I hear is that I am too thin. Used to hear I was too fat. Is there ever a happy medium? I do look older thin but I feel better, healthier. I have lost my appetite to an extent and I just seemed to shed my weight, it's like a combination of the two things together working for you. In other words I was a huge eater before now I am a normal eater. I have no other side effects with this medication and I have been on it for a year. I believe you would probably lose weight even if you ate the same, I could be wrong but it's what I think. This drug is like a miracle and could probably help a lot of obese people.
I started out taking it for migraines at 25 mg a day and then eventually 50 mg a day. I dropped 5 lbs the first week. My dr left me on it and added in Lexapro and Strattera. Just last week she upped my dose to 100 mg a day. It has totally killed my appetite. I haven't weighed recently but just in the past week I can tell my clothes are fitting bigger. I lost 35 lbs on Atkins before taking the Topamax, Lexapro, and Strattera.
I had read some research where there was talk of potentially using it in the future as a possible weight loss medication but there was tons more research and study to be done on it before going to the FDA with it. After having tried Meridia myself, I find this to be a great treatment to help overweight people. (I lost 10-15 quickly on Meridia but felt loopy all the time and gained it all right back after I stopped taking it when people starting having heart attacks on it.) I was able to go from a size 16 to a Size 8/10 while doing Atkins and hopefully with the help of the Topamax, a good diet, and exercise would like to get to a 4/6. I can't say the weight loss from the Topamax is a bad side effect in my opinion. :)
Posted by imlaurie on May 19, 2004, at 20:43:52
In reply to Re: Topamax Experiences?, posted by Simoncat on May 19, 2004, at 20:33:08
You must feel like a million bucks losing that much weight! I like being thin but it does make me look old compared to me looking young for my age when I was heavier a year ago. Since reading here I have come to realize that my hair falling out in clumps is a side effect of the Topamax. I was thinking I was side effect free.
Posted by shadows721 on May 20, 2004, at 23:03:33
In reply to Re: low dose topamax, posted by imlaurie on May 18, 2004, at 7:49:37
I first noticed it as a child. I would see the door to the closet look as though it was swaying slightly left and right. I thought my eyes were playing tricks with me. As an adult, it got worse. I would see pictures rock toward me and side to side. A psychiatrist said that it is from the Post traumatic stress disorder. I don't know, but it seems a bit better with the topamax. The seeing things moving could be from this tremor too, which also could be from Ptsd.
I think the drug helps me, because it is an anticonvulsant and must work on my hyperactive central nervous system.
Posted by theo on May 22, 2004, at 10:35:39
In reply to Re: low dose topamax, posted by shadows721 on May 20, 2004, at 23:03:33
I just started low dose Topamax myself, 25mg at bedtime, moving to 50mg in about 5 days and if needed to 75mg max.
I'm taking Topamax because Neurontin failed and because it also has a once daily dosing. The only thing that made my anxiety worse was that warning about possible gluacoma and eye damage, which I'm sure is rare and from what I've read only occured in epileptic patients at high doses, but I'm the type with such high anxiety that even when my doctor tells me at such low doses not to worry, my mind starts to panic!
Anyway, so far so good. I was also worried about the possible "cognitive impairment" but at such low dose don't think I'll have to much to worry about. Let me know how it works for you, positive or negative and I will do the same.
Posted by headachequeen on May 22, 2004, at 13:06:44
In reply to Re: low dose topamax » shadows721, posted by theo on May 22, 2004, at 10:35:39
> I just started low dose Topamax myself, 25mg at bedtime, moving to 50mg in about 5 days and if needed to 75mg max.
oh dear, the fast track has been shown over and over again to be the fast track to unpleasant side effects... just ask Bridgey and me about the blurred vision and so on...
most neurologilsts will tell you to increase the doses no faster than by two week increments... and not to increase them faster than that if you are not comfortable...
the usual dosage charts tell you to start at 25 mg in the evening for two weeks then go to 50 then to 75 and so on until 200 mg and then to start at an additional 25 mg in the morning if needed... or if only 200 mg total is needed, the suggestion may be to stop at 100 in the evening and start an extra 25 in the morning and so on... and only start the next dose when you feel ready...
not to charge ahead at five days....
this is when the unpleasant side effects kick in... fools rush in where angels fear to tread someone once sang and I think the song referred to topomax <GGG>
take it slowly and then things will go well...I am an epileptic on high doses of topomax and on 400 twice daily of the demon tegretol and I have no occurrence of glaucoma although I did hit the panic button a year or so ago about the dread disease... before I heard of topomax actually... turned out to be pressure from entropion... and that has been dealt with...
glaucoma is apparently a rare side effect but it is checked out regularly needless to say...topomax does its job with a lot of fear from the side effects it can and does create...
so we take it easy and slowly, drink lots of water, take our vitamins and biotin, and share our concerns and discoveries and hold each others' hands <gggg>
kat
Posted by theo on May 22, 2004, at 14:36:11
In reply to Re: low dose topamax » theo, posted by headachequeen on May 22, 2004, at 13:06:44
By "just starting," I mean I'm already 5 days into taking 25mg already, so in another week will go up to 50mg. I'm taking two week gaps in between dose increases and may not go past 50mg once at bedtime.
Posted by theo on May 22, 2004, at 14:48:59
In reply to Re: low dose topamax » theo, posted by headachequeen on May 22, 2004, at 13:06:44
What kind of eye tests do eye doctors use to check for glaucoma? Even SSRI's have caused blurred vision and redness of eyes, so if and when would be a true sign to hit the panic button and have your eyes checked with Topamax? Again, I'm taking a very low dose and should probably make a decision to give it an honest try and not put myself through this anxiety. I actually have less eye twitching and less redness in the morning when I wake up for some reason, maybe better sleep and less headaches even at 25mg. Do you think it's a good med?
Posted by headachequeen on May 22, 2004, at 18:28:56
In reply to Re: low dose topamax » headachequeen, posted by theo on May 22, 2004, at 14:36:11
> By "just starting," I mean I'm already 5 days into taking 25mg already, so in another week will go up to 50mg. I'm taking two week gaps in between dose increases and may not go past 50mg once at bedtime.
aahhhh.... my mistake... I thought you meant you had just begun and were going to move up five days later... it has happened and then the side effects were difficult to say the least ...
kat
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