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Dr. Bob is Robert Hsiung, MD,
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Posted by Ladee52 on January 14, 2004, at 9:24:38
In reply to topomax, posted by Ellen Brodie on April 19, 1999, at 15:58:40
Hi! I'm new to this website and am new to Topomax which my neurologist has me on for severe acute migraine syndrome. I have had a migraine headache since the middle of October...some days are better than others. I have had migraine headaches occasionally since I was in my middle 20's and now I am 51 so they aren't totally new to me. The doctor has had me slowly increase my dosage of Topomax to help prevent the side effects. I am currently at 75 mg's a day building to 100 mg's a day which is where I think he wants me to top out; however, I still have a headache at all times although the pain intensity has decreased though I still have some severe headaches at times. The side effects I have noticed are my face breaking out, I feel very tired and listless at all times, have severe insomnia, my tastes have changed, and I am either very hot or very cold. I have noticed a slight decrease in my appetite, but nothing major and I haven't lost any weight which I'd really like to do. Am just looking for more info and insight into this drug. Thanks!
Posted by bridgey1128 on January 14, 2004, at 9:49:01
In reply to Re: topomax, posted by Ladee52 on January 14, 2004, at 9:24:38
I am up to 50mg so far and I am probably going to have to be bumped up eventually. I am not sure how high my Dr wants to go yet. My face hasn't broken out anymore than normal but I have noticed the tingling thing going on. It stopped at the 25mg and I knew it was ok to move on up to the 50mg. WHOO WEE!! DON'T move up to the next dose too soon...lost my eyesight for a couple days...scary stuff. Kat helped me though! THANKS!!! The tingling thing is back so I am assuming that will go away. My dr told me that weight loss is usual around 150mg and higher. I haven't experienced too much weight loss but I have noticed a decrease in my appetite. I guess everyone is different and responds differently to drugs. I also take it for bipolar and not migraines. Maybe that affects the side effects too. If your face is breaking out, make sure you have a good skin care regiment. That can help with the acne also. Hope this helps some!
Posted by headachequeen on January 14, 2004, at 15:58:30
In reply to Re: topomax, posted by bridgey1128 on January 14, 2004, at 9:49:01
> It stopped at the 25mg and I knew it was ok to >move on up to the 50mg. WHOO WEE!! DON'T move up >to the next dose too soon...lost my eyesight for >a couple days...scary stuff. Kat helped me >though! THANKS!!! The tingling thing is back so I >am assuming that will go away. My dr told me that >weight loss is usual around 150mg and higher. I >haven't experienced too much weight loss but I >have noticed a decrease in my appetite. I guess >everyone is different and responds differently to >drugs. I also take it for bipolar and not >migraines. Maybe that affects the side effects >too... Hope this helps some!
My neurosurgeon gave me a schedule to follow with a copy for the pharmacy...
I started at 25 mg each evening for two weeks, then increased in 25 mg increments at two week intervals... when I had reached the 200 mg level, I began to take 25 mg in the mornings, increasing the same way until I reached the 220 mg...
I did make a mistake and didn't read the schedule properly and started taking it in the am which led to upset stomach so I was not impressed at first...
the neuro told me not to increase the dosage until I was ready and the schedule repeated that recommendation, to increase at my own level of comfort but no faster than at two week increments...when I got the timing right, the upset stomach disappeared and we began to get along the topomax and I...
I do have the tingling extremities but then I already suffered from that to an extreme thanks to Tegretol so I cannot tell if Topomax has increased it... there was hair loss at one point, but I already had a problem with that BIG TIME from Tegretol and Murph on this list mentioned Biotin and vitamins... no more hair loss and the dry straw hair is no more so Tegretol is weeping in its little plastic bottle although my hands always feel numb and cold and asleep as do my feet and sometimes my forearms... classic Tegretol symptoms I am told by my orthopaedist...
I take the Topomax to control migraine as a side effect to its seizure control and it is has worked in controlling the migraine almost since day one.. I have not had a migraine since January of last year... and have been taking Topomax since January of last year...
From the early days of taking the stuff I lost my appetite... and began to lose weight.. have said this over and over again I know but someone just asked again...
lost three pounds or so the first week...
I have just taken a load of clothing into the consignment store... and all of it really great stuff I might add... size 16, 14, and so on... today I was buying size 9 slacks and jeans...
sweaters in size small... I had to take in my favourite London Fog coat... a wonderful rust tweed with fur around hem and collar size 18 and bought a suede jacket that can't begin to compare in a small.. there was a coat I have long wanted to own... the style that is, a full-length Inuit embroidered coat in rust, with wolf-fur around the hood and at half-price and in a 1-x re-Topomax and I would have been able to wear it... today I could have worn it three or four times...
I have no head-aches, and am back on the yoghurt, eggs and protein craze... no diet to follow, this is just what I want... when I feel like eating...
and some days it is late in the day before I feel at all hungry...
even coffee doesn't appeal to me...
on that note, I suggest someone call in the medics.. there must be something drastically wrong.. I used to drink it by the gallon...
but I pour a cup and then look at it.. and wonder why I bother...
Scary stuff LOL
kat
Posted by TropicalGirl12 on January 14, 2004, at 16:46:57
In reply to Re: topomax, posted by Ladee52 on January 14, 2004, at 9:24:38
Hey
I started out taking 2 25mg tablets daily, then eventually i took 2 in the morning and 1 a night-and after that i worked my way up to 100 mg a day. My side effects started out with just tingly fingers and toes, didnt bother me though it made me laugh :) Then my taste buds got all messed up, soda tasted really bad and some other foods also. Then i started to feel confused and i also had blurry eye sight, which got annoying but it wore off. I also craved healthy foods, which was a plus! Now im at 2 100mg tablets daily, and it takes away my appetite and occasionaly i get those side effects. But i havent been taking it lately because of it interfering with the birth control, im just paranoid that ill get pregnant. Overall, i think its a great medication with many uses!
Posted by bridgey1128 on January 14, 2004, at 16:57:17
In reply to Re: topomax, posted by TropicalGirl12 on January 14, 2004, at 16:46:57
The info I had read on it was that it didn't interfere with BC until you had to take 1200mg and up.
Posted by TropicalGirl12 on January 14, 2004, at 17:06:08
In reply to Re: topomax, posted by bridgey1128 on January 14, 2004, at 16:57:17
I hope your right, i just cant help but worry about it. I dont want to be that one person it happened to, you know? Thanks for the info! :)
Posted by headachequeen on January 14, 2004, at 22:05:40
In reply to Re: topomax, posted by TropicalGirl12 on January 14, 2004, at 17:06:08
> I hope your right, i just cant help but worry about it. I dont want to be that one person it happened to, you know? Thanks for the info! :)
anything I can find says that only the extreme doses (1200 mg a day or more) will interfere with birth control... and as it is a secondary anti-seizure med I doubt if there is anyone out there with a dose any higher than that surely...
kat
Posted by headachequeen on January 14, 2004, at 22:13:55
In reply to Re: topomax, posted by TropicalGirl12 on January 14, 2004, at 16:46:57
> Hey
> I started out taking 2 25mg tablets daily, then eventually i took 2 in the morning and 1 a night-and after that i worked my way up to 100 mg a day. My side effects started out with just tingly fingers and toes, didnt bother me though it made me laugh :) Then my taste buds got all messed up, soda tasted really bad and some other foods also. Then i started to feel confused and i also had blurry eye sight, which got annoying but it wore off. I also craved healthy foods, which was a plus!
I find it amazing that there is such a random timing with the dosage or is it just the neurosurgeons who set the definite schedules? or is it a Canadian thing? and I do remember how upsetting it was to start taking it in the mornings... to the point that I dreaded taking it in the mornings when I came to the time to add the morning doses...and I am really interested in your comment about craving healthy foods... I am still on my protein craving kick... forget the sweet foods and the sandwiches and the not particularly good for one foods... and that is really not normal for me...
and it is almost as if someone innoculated me with an anti-chocolate substance...
as for this recent anti-caffeine kick that I have been on... that is beginning to raise comment among people who know me... even among people who know me only slightly...
the waitresses at the restaurant I frequent now bring me water without ice cubes as soon as I walk in... and wait to see if I want a coffee or not... I can not stand ice cubes in water or soft drinks and have taken to craving orange juice, something I would not have considered as mildly potable a few months ago...
my whole lifestyle is changing...
Cheese!!! oh, I liked brie and camembert and gorgonzolla and other veined cheeses but now I even like and want cheddar and oka and heaven knows what other kinds of cheese...
I am beginning to sound like a health nut and before long will be eating tofu...
kat
Posted by TropicalGirl12 on January 14, 2004, at 22:33:39
In reply to Re: topomax » TropicalGirl12, posted by headachequeen on January 14, 2004, at 22:13:55
Hey
I completely understand what you mean. It seems like the topamax makes me walk right by the things i would normally want, and makes me eat the things my body should have. I used to love ramen noodles, chips, peanut butter and fluff sandwiches, and anything sweet. Those foods were not my normal meals, but they were the things i would think about when i was hungry. But when i started topamax all i would want was salad, a veggie sub, fruit, toast, or vegetables. Its great though, i never thought i would be naturally going for those foods. I dont think ill be going for tofu anytime soon though! :)
Posted by TropicalGirl12 on January 14, 2004, at 22:45:45
In reply to Re: migraine control and weight loss » TropicalGirl12, posted by headachequeen on January 14, 2004, at 22:05:40
Hey, where are you finding this information. I checked out topamax.com and ive been searching online but i cant find anything anywhere.
Posted by Ladee52 on January 14, 2004, at 23:05:47
In reply to Re: topomax, posted by TropicalGirl12 on January 14, 2004, at 22:33:39
> Hey
> I completely understand what you mean. It seems like the topamax makes me walk right by the things i would normally want, and makes me eat the things my body should have. I used to love ramen noodles, chips, peanut butter and fluff sandwiches, and anything sweet. Those foods were not my normal meals, but they were the things i would think about when i was hungry. But when i started topamax all i would want was salad, a veggie sub, fruit, toast, or vegetables. Its great though, i never thought i would be naturally going for those foods. I dont think ill be going for tofu anytime soon though! :)
I have noticed that my tastes seem to be changing. I was a Diet Coke drinker and now they all seem to taste flat. The doctor does have me increasing my dosage at 2 week intervals and I've got one more week at 75 mg's. I go back to see him after I've been on 100 mg's for 2 weeks. My appetite has decreased a little, but I haven't started craving healthy foods yet, unfortunately.
Posted by headachequeen on January 15, 2004, at 13:34:11
In reply to Re: topomax, posted by TropicalGirl12 on January 14, 2004, at 22:33:39
> Hey
> Its great though, i never thought i would be naturally going for those foods. I dont think ill be going for tofu anytime soon though! :)I can't imagine a high enough dose of anything, even Topomax making me want to eat the stuff... LOL
I think I would starve first... correction, I KNOW I would starve first... I have tried it <g>
kat
Posted by TropicalGirl12 on January 15, 2004, at 18:08:46
In reply to Re: topomax » TropicalGirl12, posted by headachequeen on January 15, 2004, at 13:34:11
Haha good point! :)
I actually called ortho mcneill today, the company that makes topamax and asked them about my concerns with it interfering with my birth control. They said that studies really havent proved anything for sure, and that the studies they did do show that it interferes at dosages of 200-800 mg. Pretty much, use a back up method of protection just incase-pain in the butt!
Posted by headachequeen on January 15, 2004, at 19:13:31
In reply to Re: migraine control and weight loss, posted by TropicalGirl12 on January 14, 2004, at 22:45:45
> Hey, where are you finding this information. I checked out topamax.com and ive been searching online but i cant find anything anywhere.
I have asked several doctors... and you can imagine their responses LOL considering my age and the fact that they are highly familiar with my medical history...
but told them that I wanted to know and they all said the same thing that in their experience the dosage had to be high... most hedged their bets saying that they would suggest that anyone taking 800 mg or more should be careful although they all added that anyone needing that much should be considering back up means anyway as epilepsy requiring that much secondary medication was definitely not a situation to consider pregnancy....kat.... who is definitely not considering pregnancy... found out what caused it and put a stop to it
Posted by TropicalGirl12 on January 15, 2004, at 19:34:11
In reply to Re: topomax » TropicalGirl12, posted by headachequeen on January 15, 2004, at 19:13:31
Im definately not considering pregnancy either! :) When i asked my doctor she knew absolutely nothing, and neither did my psychiatrist-i just get too nervous taking it becaue i dont want any babies! Are you taking birth control with topamax? If so, for how long?
Posted by headachequeen on January 15, 2004, at 20:12:09
In reply to Re: topomax, posted by TropicalGirl12 on January 15, 2004, at 19:34:11
> Im definately not considering pregnancy either! :) When i asked my doctor she knew absolutely nothing, and neither did my psychiatrist-i just get too nervous taking it becaue i dont want any babies! Are you taking birth control with topamax? If so, for how long?
As I said before, I learned what caused pregnancy and put a stop to it... I never wanted children at all... now there is a concept and in a society that was at the time extremely family-oriented and in which a woman or girl was not supposed to consider not having a family let alone stating such an idea out loud... oh mon dieu! quel idee!
it was worse than inciting a riot or rebellion.. in fact, rebellion was quite acceptable when I look back on it...
but I wanted to know the risks considering the thread that had been started here... and the neuro and the other doctors treating me all said the same that it became a risk in higher doses...
let us hope they know whereof they speak...
kat
Posted by lizi G. on January 16, 2004, at 15:51:14
In reply to Re: topomax » TropicalGirl12, posted by headachequeen on January 15, 2004, at 20:12:09
I just learned that a fellow groupie took Depakote (as I am) and she gained a bunch of weight on it. The psychiatrist took her off that and put her on topomax and she has lost 80 pounds without complications. She doesn't even look like she could have ever carried that much!
I hope the doctor will do the switch for me as I am turning into a balloon!
Posted by bridgey1128 on January 16, 2004, at 16:01:41
In reply to Re: topomax, posted by lizi G. on January 16, 2004, at 15:51:14
I flat out told my Dr I refused to take anything that would make me gain weight...PERIOD. NO IF ANDS OR BUTS. THE END. And he put me on Zyprexa at first. I told him..if I gain..it's gone. He agreed. Well...I gained 5lbs in 3 days.. I said NO MORE! So now I am on the Topomax. Girl, sometimes you just gotta put your foot down and tell them what for! It's YOUR body. And being overweight CERTAINLY doesn't help depression. They really need to do more research on drugs that don't make you gain weight! DUH HELLO! WHy are so many of us depressed? BECAUSE WE'RE FAT! And they think giving us a drug that makes us fatter is going to help? Shoot no, I'd rather be crazy. Maybe Topomax won't work, but hey, it's worth a shot. It has so many uses I never knew it had until I came on here. Tell him you are sick and tired of gaining weight and fighting it and you WANT to be on Topomax, do some research and tell him what you have found. He can't argue with intelligent answers. Worth a shot! Good luck!
Posted by Karen_kay on January 16, 2004, at 19:16:39
In reply to Re: topomax, posted by TropicalGirl12 on January 15, 2004, at 19:34:11
There are bc options, they just have to be high in estrogen. I'm on demulen 1/50, but the side effects aren't tolerable for me. It's causing extreme acne. I believe you can also use the patch. I'm fairly certain of this, in fact. I'm going next week to find out what other options I have. I know you can take bc, it just has to be high in estrogen. Demulen is high in estrogen, but it caused me to also get a yeast infection (oh no!!! can you believe that?). I'll find out what ALL of the options are and report back. I'm taking 300 mgs a day, bTW. And again, you need to be sure that you tell your OBGYN that you're taking topamax before starting bc. I'll let you know what happens...
Posted by TropicalGirl12 on January 16, 2004, at 19:53:30
In reply to Re: topomax » TropicalGirl12, posted by Karen_kay on January 16, 2004, at 19:16:39
Thanks, i was actually on the patch. I didnt like it because it caused acne also, i know people say that topamax does but i was taknig it for a few months before and had no problems with that. Then when i started ortho evra, my face broke out. I looked and felt terrible. The patch also made me really hungry, it just gave me a lot of cravings- i guess it was due to the high level of hormones. So now im gonna try othro tri cyclen lo. My doctor knows im on topamax and didnt tell me it interfered with BC, i found out on my own research. But if the patch will work better than the pill, im willing to go back and ask about other options for acne. Thanks for your help :)
Posted by headachequeen on January 16, 2004, at 21:11:29
In reply to Re: topomax, posted by lizi G. on January 16, 2004, at 15:51:14
She doesn't even look like she could have ever carried that much!
>
> I hope the doctor will do the switch for me as I am turning into a balloon!Between depression and medications I had ballooned from a reasonable size 10 to a size 16 sometimes size 18 and weighed over 200 pounds...not much over admittedly but enough to make me feel disgusted with myself and that added to the depression ...
the topomax and its effect upon my appetite has had an effect upon my weight that diets could not achieve... diets and illness would take the weight off but I could not keep it off for any length of time...
this time the weight has started to come off (the weight loss began last January) and has continued... the other day I was pleased to discover that I had to buy a size eight pair of jeans if I wanted to look neat and tidy and not sloppy... and the winter jacket I have been wearing is too large and looks untidy; I had to buy a small ... many of the sweaters I have I can wear as they look intentionally large but the x-l ones have to go... and I have had to go out and find some small size sweaters for the dressier look I prefer... I have this tailored look hang-up... oh there is another thing the psychologist can hang his hat on next session LOL...
the topomax does help with weight loss; the dramatic weight loss does not come overnight but even the little losses are a boost to the ego, trust me... I know <GGG>
kat
Posted by Karen_kay on January 17, 2004, at 8:16:45
In reply to Re: topomax, posted by TropicalGirl12 on January 16, 2004, at 19:53:30
I can't afford all of these doctors!!! ARG!!! I'm not paying out of pocket to see a dermotologist. You said the patch caused acne for you? Then I'm not doing it. I'm going to just assume that all bc with high levels of estrogen cause acne. Demulen caused acne really bad, and I've never really had a problem in the past. Slightly with topamax, but I use Clinique 3 step and it helps keep it at bay. I give up. Back to condoms. My boyfriend can suffer, as I WILL NOT!!! Not on this one. I did read though that the interaction rate, if you take 400 mgs/day is estimated to be at about 20% , 200 mgs is 18% and 800 mgs topamax is 30 %. that's from topamax.com on teh third page under oral contraceptive section. And again,they aren't completely sure...
Posted by TropicalGirl12 on January 17, 2004, at 15:29:02
In reply to Re: topomax » TropicalGirl12, posted by Karen_kay on January 17, 2004, at 8:16:45
Doesnt that annoy you, the fact that they dont know exactly if the medication is gonna interfere, and get you pregnant. Supposedly the birth control i staretd taking, will help clear up acne. I just stopped taking topamax temporarily until i figure everything out. I just wanna test whether or not its the topamax by itself causing acne, or it being combined with birth control. We'll see how that goes
Posted by Karen_kay on January 17, 2004, at 23:22:24
In reply to Re: topomax, posted by TropicalGirl12 on January 17, 2004, at 15:29:02
I love topamax much more than sex. So, if I have to chose, I know where I stand :) I couldn't get an appointment before my BC ran out, so I'm up poop creek without a paddle. Back to condoms for a month, I suppose. My therapist actually suggest the old pull-out method. I was shocked! That's like 12% effective, HELLO! Maybe that's why he has 2 kids! :) But, I'm going to see my OBGYN this week and saying, "Listen, no acne and no yeast infections. What's going to work?" If they don't have any suggestions, then I'm back to condoms or abstinence. I just don't care anymore. I'm done with this whole business. Maybe I'll become a born-again virgin! At least my skin will improve and I won't have to worry about scratching myself in public, YIKES, I almost feel like a man :)
Posted by Aubrey13 on January 18, 2004, at 2:16:09
In reply to topomax, posted by Ellen Brodie on April 19, 1999, at 15:58:40
Be careful with daily use of Klonopin. It is a highly addictive controlled substance, in a different classification of drugs than the mood stabilizer. I could not believe I was prescribed Klonopin in the hospital after I told them I had been abusing it(someone else presciption). At the time I truely wanted to get well an refussed to take it.
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