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Dr. Bob is Robert Hsiung, MD,
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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
Posted by headachequeen on May 22, 2004, at 19:28:13
In reply to Re: low dose topamax » headachequeen, posted by theo on May 22, 2004, at 14:48:59
> What kind of eye tests do eye doctors use to check for glaucoma?
The "puff test" or usual one measures intraocularpressure. Another way doctors may measure it is by pressing an instrument called an applanation tonometer against your eye to determine how much resistance there is.
Your eye doctor may also want to check for optic nerve damage by dilating your eyes, or to check for vision loss with a visual field test. It involves staring straight ahead into a machine and clicking a button when you notice a blinking light in your peripheral vision. The visual field test may be repeated at regular intervals for your doctor to determine the extent of vision loss.
It is not difficult or stressful and takes a very short time...
this one the eye specialist ordered to be sure that there was no serious damage after he had ruled out glaucoma and to try and find out why there was so much pressure and why I could not see from the corners of my eyes...
He also ordered an ultrasound... it was really incredible...
they use fibre-optics and it is incredible at risk of repeating myself... the technology is amazing...
a technician actually passes a fibre-optic brush over the eye to see what is happening in the eye itself... you barely feel the touch of the very gentle little tendrils... and it tells her so very much as it does its work...Your eye has pressure just like your blood; when intraocular pressure increases to dangerous levels, it damages the optic nerve which can result in decreased peripheral vision and, eventually, blindness. Glaucoma is sort of like ocular hypertension but with accompanying optic nerve damage and vision loss. Glaucoma gradually reduces your peripheral vision, but by the time you notice it, permanent damage has already occurred. If your IOP remains high, the destruction can progress until tunnel vision develops, and you will only be able to see objects that are straight ahead.
One of the reasons I thought I was suffering from glaucoma was that my eyelids were causing such pressure on my eyes that I was in constant pain, as if someone were driving a railway spike through my skull into my right eye and turning a large corkscrew through my temple into that eye. I had no peripheral vision in my right and very limited peripheral vision in my left eye.
Glaucoma produces sudden symptoms such as eye pain, headaches, haloes around lights, dilated pupils, vision loss, red eyes, nausea and vomiting. These signs may last for a few hours, then return again for another round. Each attack takes with it part of your field of vision.
So I began to be greatly concerned as I was suffering most of these symptoms. At night, lights shimmered and had a halo effect. During the day, they didn't have that effect, but then who uses lights during the day???
My eyes were itchy and sore all the time, and constantly red and puffy -- of course, I was rubbing them constantly too and the lashes were scratching against the lens part of the eye which did not help at all.
The migraine headaches did not help my concerns any and the pain from the nails being driven into my head certainly added to the fears.
In addition I began to see things in sepia for days at a time and in the evening and at night everything was totally blurred despite my glasses which I had changed twice, thinking that perhaps I needed a new prescription -- and I did each time.
My neurologist had me tested for myasthenia gravis because of the drooping eyelid -- the right eyelid was so pronounced that he was convinced that it had to be myasthenia...
and that is a test I would not wish on my worst enemy!>>>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?
Anyone at risk of glaucoma should be tested every two years at least... if you have concerns or worries then yearly would be an option but remember that it is a rare side effect.... and happens only on high doses...
I am on a fairly high dose to control migraine and seizures and to control the other anti-seizure med and I have no risk of glaucoma
The glaucoma concern of pre-topomax days having been laid to rest and the fourth and fifth surgeries to my eyes having been accomplished last week (only two to go... wheeeeee!!!) I shall have my eyes checked for glaucoma in two years' time as a precaution because of the earlier scare but not because of the topomax>>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?
Moi??? Moi, I think it is a great medication...
yes, there are side effects. I do not rule out the reality... I am after all a journalist first and foremost... cynical and a realist <g>... but I see the changes that this med has made in my life and I see the value of it and I am grateful that it exists...
Without topomax I would still have the days in the darkened room and the trips to emerg for something to kill the pain of the migraine, the days when I was totally unable to be productive...
without it I would still have the breakthrough seizures in their heaven-knows-what-numbers, as the tegretol was not accomplishing any great success in stopping them...
so, yes, in MY opinion, it is good...
there are others, though, who think it is awful or worse...
as the man with the broken leg said, it's a matter of a pinion...
kat
Posted by shadows721 on May 22, 2004, at 19:54:17
In reply to Re: low dose topamax » theo, posted by headachequeen on May 22, 2004, at 19:28:13
I have been getting dizzy spells. I mean really like feeling like I am spinning. Also, I find that I can't stand the heat. I was in a mall the other day and it felt like the air was off. I had to get a cold drink and sit down. I felt like I was going to black out. I tell you I can sleep 24/7 too.
Posted by headachequeen on May 22, 2004, at 21:43:57
In reply to Re: low dose topamax-other side effects, posted by shadows721 on May 22, 2004, at 19:54:17
> I have been getting dizzy spells. I mean really like feeling like I am spinning. Also, I find that I can't stand the heat. I was in a mall the other day and it felt like the air was off. I had to get a cold drink and sit down. I felt like I was going to black out. I tell you I can sleep 24/7 too.
I don't know about the dizziness or the rest of it but I wish I could hit the sleep part... sigh
kat
Posted by theo on May 23, 2004, at 7:43:22
In reply to Re: low dose topamax » theo, posted by headachequeen on May 22, 2004, at 19:28:13
Thanks for taking the time to respond. Everyone in my family wears glasses or contacts and I have better than 20/20 vision, so I rarely go for a check up, which is probably something I need to start doing regardless of what meds I'm taking because I just turned 40 and it's probably been 5 years since an eye exam because I have had no definite reason to go.
So you mainly take Topamax for what it is prescribed for, seizures, then off label for migraines. I'm mainly taking it for anxiety and occasional migraines. My main hope of course is it's effect on calming my rapid fire anxiety. Has it helped calm you in respect to use for anxiety? It doesn't sound like anxiety is an issue with you but could you see Topamax being effective for anxiety?
I know everyone reacts different but am hoping to receive some positive results from Topamax after total disappointment from Neurontin. The main reason I've heard people never feel results from Topamax is because they get impatient and bail out to soon before the med gets a chance to work. So far I've not had any side effects at all, maybe a little agitation but just the first few days.
Did you experience initial side effects every two weeks when you increased dose?
Posted by headachequeen on May 23, 2004, at 16:13:54
In reply to Re: low dose topamax » headachequeen, posted by theo on May 23, 2004, at 7:43:22
>
> So you mainly take Topamax for what it is prescribed for, seizures, then off label for migraines. I'm mainly taking it for anxiety and occasional migraines. My main hope of course is it's effect on calming my rapid fire anxiety. Has it helped calm you in respect to use for anxiety? It doesn't sound like anxiety is an issue with you but could you see Topamax being effective for anxiety?
>
> I know everyone reacts different but am hoping to receive some positive results from Topamax after total disappointment from Neurontin. The main reason I've heard people never feel results from Topamax is because they get impatient and bail out to soon before the med gets a chance to work. So far I've not had any side effects at all, maybe a little agitation but just the first few days.
>
> Did you experience initial side effects every two weeks when you increased dose?I think that you are right about the early bail-out reactions... people seem to quit withing days of starting the protocol and often because they hear of side effect potentials... great reason to stop of course... well, the mailman's aunt's cousin's hairstylist knows someone who said that .... so I am quitting...
and others increase the dosage too fast and then quit because of side effects....I did have early side effects... but it was my own fault...
the neurologist gave me a sheet of instructions which I read and then forgot to read again...
the directions were explicit: I was to start the 25 mg in the evenings and not to increase the dosage for at least two weeks... still in the evenings...
for some reason I started taking the stuff in the mornings... and oh the nausea and dizziness that came with starting it in the morning...
I went back and read the information he had given me because I wanted to know what else was said about possible side effects and there it was in bold-faced type: evenings... and it was to be taken with food...
so the brain did a little somersault and I switched to evenings and I take it with yoghurt and I have not had a problem that way...
I did have a constant thirst but simply added more water to my daily plan of doing things and that seems to help...
for that matter the doctor that I can never remember but he deals with vocal cords tells me to drink more anyway... so he is happy too... although he says no ice and he has banned soft drinks from my life, so if the soft drinks have changed in appeal I don't really know although I must admit that one I had recently tasted odd... found out the other day that the restaurant I was at serves only diet pop though.... yech... no flavour there anyway and they always have an aftertaste so I cannot blame the topomax... LOLthere was a brief cognitive confusion time too but it was for only a week or two...
I don't know if the topomax has helped with anxiety or not... for a while I was doing things more slowly -- no longer going in over drive so to speak; of late I have hit that speeding up -- speech, walking, everything again... maybe the topomax will help there... who knows...
it has certainly helped with the migraines and with weight loss... and those are two bonuses indeed...
I know that when the neurologist said that it had a side effect, I braced myself for all the horrors that come with tegretol and he mentioned only the weight loss (he had already mentioned the migraine control) and I had to think for about five seconds before I agreed to try it <g>
kat
that is a great help indeed...
Posted by theo on May 23, 2004, at 16:55:32
In reply to Re: low dose topamax » theo, posted by headachequeen on May 23, 2004, at 16:13:54
You mentioned one side effect I don't need, weight loss. Is weight loss because of appetite suppression or does it actually cause you to metabolize things faster? My doc said it's due to suppression and at low doses I shouldn't worry, and at 25mg my appetite has not decreased at all. When did you notice a weight loss effect with Topamax, at what dose?
Posted by imlaurie on May 23, 2004, at 21:08:24
In reply to Re: low dose topamax » headachequeen, posted by theo on May 23, 2004, at 16:55:32
I was taking 100 mgs daily and I soon cut it down to 50 daily. I lost a lot of weight in a short period of time, 50 lbs. in a couple of months.I think it is part due a loss of appetite and part due to the medication itself somehow causing weight loss.
Posted by headachequeen on May 23, 2004, at 21:51:43
In reply to Re: low dose topamax » headachequeen, posted by theo on May 23, 2004, at 16:55:32
> You mentioned one side effect I don't need, weight loss. Is weight loss because of appetite suppression or does it actually cause you to metabolize things faster? My doc said it's due to suppression and at low doses I shouldn't worry, and at 25mg my appetite has not decreased at all. When did you notice a weight loss effect with Topamax, at what dose?
I began to notice a the effect at 25 mg
lsot three pounds the first week and then moderate amounts over a period of time...the weight loss comes from appetite suppression and not from a change of metabolism ... I still have the same exercise and activity level I had before... still do the same things and still have the same energy level...
still do agility and tracking and obedience
still walk a lot
and now that my eye has been opened LOL I am able to use my cameras again (the right eye is my dominant eye for photography and target shooting another hobby of mine) and I plan to spend the next few months scrambling around photographing anything that catches my eye no pun intended, good or otherwise...
I have missed being able to use my cameras believe me...
the weight loss has occurred over a period of time, a long period of time and is I think continuing, although the past day or so is no indication of that as today I have an attack of the munchies...
I do not know what I want to eat, I just feel like eating...
so far I have not identified the subject of that need to eat but when I do, world look out !!!this does happen to me on occasion...
however, I still have no wish to drink pop or juice-type drinks...the weight loss was not a sudden and horrendously obvious thing...
but it has been a good thing from my point of view... I just don't want to return to the under 100 pound state...
kat
Posted by theo on May 24, 2004, at 11:34:01
In reply to Re: low dose topamax » theo, posted by headachequeen on May 23, 2004, at 21:51:43
Posted by theo on May 24, 2004, at 15:38:07
In reply to Re: low dose topamax » theo, posted by headachequeen on May 23, 2004, at 21:51:43
Do you take an SSRI or other antideppressant with your Topamax?
Posted by imlaurie on May 24, 2004, at 19:05:03
In reply to One more thing » headachequeen, posted by theo on May 24, 2004, at 15:38:07
I do, I take 20 mg. Lexapro
Laurie
Posted by shadows721 on May 24, 2004, at 22:07:16
In reply to Re: One more thing, posted by imlaurie on May 24, 2004, at 19:05:03
I had horrible headaches before my period and I noticed this month I didn't have that. It was wonderful. However, my period is longer and heavier. Anyone else experience this?
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Dr. Bob is Robert Hsiung, MD,
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