Have just started Topamax...
aejohnson2692
Posts: 5 Member
My DR has prescribed Topamax for my migraines. I started it on Tuesday and I'm down almost 5lb already. I know weight loss is a side effect (not taking this as a weight loss pill at all). I am eating a 2000kcal diet and exercising regularly. Only on 25mg,increasing to 50mg next week. It would be great to hear from those of you who have been prescribed Topamax before and experienced the weight loss side effect...
My loss had stalled prior to starting Topamax, and in all honesty my 2000kcal diet over the past few days hasn't been the most 'healthy' and nutritious, so I'm surprised to have lost weight.
Does the loss slow?
I have the weight to loose, so I'm not complaining.
I understand that weight loss pills aren't good and would not take them. As I say I am taking this for migraine control, it is just a side effect. I'm wondering how it works?
My loss had stalled prior to starting Topamax, and in all honesty my 2000kcal diet over the past few days hasn't been the most 'healthy' and nutritious, so I'm surprised to have lost weight.
Does the loss slow?
I have the weight to loose, so I'm not complaining.
I understand that weight loss pills aren't good and would not take them. As I say I am taking this for migraine control, it is just a side effect. I'm wondering how it works?
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I'm on 200 mg of Dopamax (there's a reason it has that nickname) for migraine as well. The reason, I was led to believe, for weight loss was that it led to decreased appetite. Are you carefully tracking your calories?
It did suppress my appetite initially, but that effect wore off over time and I've found I have a normal appetite now after taking it for so long.1 -
Yeh, had the dopamax side effect when I took during the day but have since took it before bed and been fine in that aspect. Work with a personal trainer and nutritionist so definitely still accurately tracking my calorie intake. I have noticed a bit of a decrease in appetite but have made sure to still eat x0
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I know a lot about Topamax and weight loss because I took it for many years for a couple of health conditions. When I began taking it in 2008, I lost a dramatic amount of weight, like 25lbs, without even trying (I know, right?)! Food tasted strange and it was like there was no hunger signal in my brain. I remember sitting down for dinner with my family without a plate because I just wasn't interested in food. I never snacked and the cupboard no longer opened and closed all day long. Needless to say, it was awesome and I looked great. However, there are serious side effects that are very real with this medication, such as brain fog and memory impairment, and that is why its nickname is Dopamax. I couldn't think of words to say and couldn't keep track of dates and times. After a while, I decided that enough was enough, and I went off Topamax. My migraines did come back and so did some of the weight. The migraines were enough to make me start Topamax again. Here's the clincher - for many, the weight loss only happens the first time you take it. I never again experienced the dramatic weight loss I did the first time I took it. I don't know why, but for many people, I've read that weight comes back quickly after quitting although your calorie intake remains the same. I experienced this but it was around 10 lbs so I was still better off than when I started (kept 15lbs off for several years after quitting.) Now I'm back at square one for the obvious reasons; I've overeaten and moved too little. Plus I'm 52 now so it's not as easy to lose weight as it used to be. So yes, it's real but how it works has never really been explained to me. I've searched the internet many times and have come up with nothing.4
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Bump for interest. My doc is pushing this for my migraines but it makes me nervous when I look at the list of side effects. I am running out of options(nothing seems to work for long) though so I am bound to cave and accept the prescription.0
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youngmomtaz wrote: »Bump for interest. My doc is pushing this for my migraines but it makes me nervous when I look at the list of side effects. I am running out of options(nothing seems to work for long) though so I am bound to cave and accept the prescription.
Have you tried other daily medications for migraines?
If you haven't, I'd run through all other options first. I got some relief for migraines, but had horrible side effects -- suicidality and suicidal ideation being the worst. I'd never go back on it if there were other options available.1 -
When I read this initially I thought you wrote Tampax and I was like, 'Go girl...better late than never!"10
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I took Topomax many years ago for chronic migraine. I lost 10 pounds in about a month. Food all tasted different and not enjoyable (which I did NOT mind at all). The side effects others have mentioned made me stop the medication. It was not worth losing my sanity over. I was forgetting things/words. I would forget what I was doing, even while driving. I also lost feeling in my arms, which was also scary. I had small children at the time, and could not deal with these side effects.
I realize you are not necessarily asking about migraines, but I am now at my 3rd injection of Botox after trying many medications and I have not had a migraine since December of 2017. That is crazy and unheard of for me. Good luck while you figure out what works best for you!2 -
leonadixon wrote: »I took Topomax many years ago for chronic migraine. I lost 10 pounds in about a month. Food all tasted different and not enjoyable (which I did NOT mind at all). The side effects others have mentioned made me stop the medication. It was not worth losing my sanity over. I was forgetting things/words. I would forget what I was doing, even while driving. I also lost feeling in my arms, which was also scary. I had small children at the time, and could not deal with these side effects.
I realize you are not necessarily asking about migraines, but I am now at my 3rd injection of Botox after trying many medications and I have not had a migraine since December of 2017. That is crazy and unheard of for me. Good luck while you figure out what works best for you!
Yes! I refer to the time on Topamax as "that time I thought I was going crazy."
It was so new on the market that a lot of the side effects weren't being widely reported, and I seriously thought I was losing my mind because no one had told me that those things could happen.2 -
collectingblues wrote: »leonadixon wrote: »I took Topomax many years ago for chronic migraine. I lost 10 pounds in about a month. Food all tasted different and not enjoyable (which I did NOT mind at all). The side effects others have mentioned made me stop the medication. It was not worth losing my sanity over. I was forgetting things/words. I would forget what I was doing, even while driving. I also lost feeling in my arms, which was also scary. I had small children at the time, and could not deal with these side effects.
I realize you are not necessarily asking about migraines, but I am now at my 3rd injection of Botox after trying many medications and I have not had a migraine since December of 2017. That is crazy and unheard of for me. Good luck while you figure out what works best for you!
Yes! I refer to the time on Topamax as "that time I thought I was going crazy."
It was so new on the market that a lot of the side effects weren't being widely reported, and I seriously thought I was losing my mind because no one had told me that those things could happen.
Me too! This was a very very bad time in my life. I'm glad it's all behind me now!
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youngmomtaz wrote: »Bump for interest. My doc is pushing this for my migraines but it makes me nervous when I look at the list of side effects. I am running out of options(nothing seems to work for long) though so I am bound to cave and accept the prescription.
Thanks for all your comments everyone. My doc didn't explain anything at all about it, and I was horrified when I googled it as the reviews are generally awful. I took my first pill on Tuesday midday and felt like no use at work as I just couldn't concentrate and wanted to sleep, but have since took them at night and feel fine. Few bouts of pins and needles but nothing to write home about as such. I do feel a bit sick after smoking sometimes (which is good, as it will encourage me to quit like I know I should) and I have been really thirsty, which again is good for me as usually I will go all day only drinking a few glasses of water and a coffee. I know it's important to drink with Topamax to avoid kidney stones. I have noticed that I can feel really full really quick when eating, but I've been careful to make sure I still try to eat my calorie allowance. The weight loss seems magic in a sense - I had a mcdonalds yesterday and I'm down another 1.5lb today!
I did feel super weak in the gym this week, as if I had no muscle whatsoever, which was strange finding activists difficult which were usually relatively easy for me.0 -
leonadixon wrote: »I took Topomax many years ago for chronic migraine. I lost 10 pounds in about a month. Food all tasted different and not enjoyable (which I did NOT mind at all). The side effects others have mentioned made me stop the medication. It was not worth losing my sanity over. I was forgetting things/words. I would forget what I was doing, even while driving. I also lost feeling in my arms, which was also scary. I had small children at the time, and could not deal with these side effects.
I realize you are not necessarily asking about migraines, but I am now at my 3rd injection of Botox after trying many medications and I have not had a migraine since December of 2017. That is crazy and unheard of for me. Good luck while you figure out what works best for you!
Were the 'dopamax' side effects occurent pretty immediately after starting Topamax for you? I'm wondering if this is something I might not be experiencing now but might experience over time, or would have already affected me by now if it was going to...0 -
There are medications that will make you gain or lose weight despite maintaining the same routine or diet. People want to attribute the change to diet or activity level but I don't believe that is always the case. I tried a birth control pill once that made me gain 10 lbs in 2 weeks. There is no way that is all water. I was keeping a careful food diary at that point. I also had the opposite experience with thyroid meds. My doctor thought I might be subclinical hypothyroid so put me on levothyroxine, very low dose and I lost 10 lbs in 1 week. It was unbelievable.3
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There are medications that will make you gain or lose weight despite maintaining the same routine or diet. People want to attribute the change to diet or activity level but I don't believe that is always the case. I tried a birth control pill once that made me gain 10 lbs in 2 weeks. There is no way that is all water. I was keeping a careful food diary at that point. I also had the opposite experience with thyroid meds. My doctor thought I might be subclinical hypothyroid so put me on levothyroxine, very low dose and I lost 10 lbs in 1 week. It was unbelievable.
I'm having my thyroid checked on Monday as underactive thyroid runs in the family. It is crazy how much impact one low dosage pill can have on the body, and how different it can be from person to person! I put on a lot of my weight whilst on the contraceptive injection.0 -
leonadixon wrote: »I took Topomax many years ago for chronic migraine. I lost 10 pounds in about a month. Food all tasted different and not enjoyable (which I did NOT mind at all). The side effects others have mentioned made me stop the medication. It was not worth losing my sanity over. I was forgetting things/words. I would forget what I was doing, even while driving. I also lost feeling in my arms, which was also scary. I had small children at the time, and could not deal with these side effects.
I realize you are not necessarily asking about migraines, but I am now at my 3rd injection of Botox after trying many medications and I have not had a migraine since December of 2017. That is crazy and unheard of for me. Good luck while you figure out what works best for you!
I've been getting botox for migraines 3-4 times a year for about 4 years. It's pricy but worth every penny for me.2 -
aejohnson2692 wrote: »There are medications that will make you gain or lose weight despite maintaining the same routine or diet. People want to attribute the change to diet or activity level but I don't believe that is always the case. I tried a birth control pill once that made me gain 10 lbs in 2 weeks. There is no way that is all water. I was keeping a careful food diary at that point. I also had the opposite experience with thyroid meds. My doctor thought I might be subclinical hypothyroid so put me on levothyroxine, very low dose and I lost 10 lbs in 1 week. It was unbelievable.
I'm having my thyroid checked on Monday as underactive thyroid runs in the family. It is crazy how much impact one low dosage pill can have on the body, and how different it can be from person to person! I put on a lot of my weight whilst on the contraceptive injection.
It is amazing. Some weight changes can be attributable to changes in diet or activity but not all. Some is based on hormones or fluid balance.0 -
aejohnson2692 wrote: »leonadixon wrote: »I took Topomax many years ago for chronic migraine. I lost 10 pounds in about a month. Food all tasted different and not enjoyable (which I did NOT mind at all). The side effects others have mentioned made me stop the medication. It was not worth losing my sanity over. I was forgetting things/words. I would forget what I was doing, even while driving. I also lost feeling in my arms, which was also scary. I had small children at the time, and could not deal with these side effects.
I realize you are not necessarily asking about migraines, but I am now at my 3rd injection of Botox after trying many medications and I have not had a migraine since December of 2017. That is crazy and unheard of for me. Good luck while you figure out what works best for you!
Were the 'dopamax' side effects occurent pretty immediately after starting Topamax for you? I'm wondering if this is something I might not be experiencing now but might experience over time, or would have already affected me by now if it was going to...
I would not say immediate, but it did not take long. I took them for about 3 months, hoping things would improve, but they did not for me. I am prone to anxiety and the side effects were making me really on edge.0 -
Whitezombiegirl wrote: »leonadixon wrote: »I took Topomax many years ago for chronic migraine. I lost 10 pounds in about a month. Food all tasted different and not enjoyable (which I did NOT mind at all). The side effects others have mentioned made me stop the medication. It was not worth losing my sanity over. I was forgetting things/words. I would forget what I was doing, even while driving. I also lost feeling in my arms, which was also scary. I had small children at the time, and could not deal with these side effects.
I realize you are not necessarily asking about migraines, but I am now at my 3rd injection of Botox after trying many medications and I have not had a migraine since December of 2017. That is crazy and unheard of for me. Good luck while you figure out what works best for you!
I've been getting botox for migraines 3-4 times a year for about 4 years. It's pricy but worth every penny for me.
I'm lucky that my insurance is covering it. It is very pricey, so my doctor had to build a case for it. I have never gone this long without a migraine. It's beyond amazing for me too!0 -
collectingblues wrote: »youngmomtaz wrote: »Bump for interest. My doc is pushing this for my migraines but it makes me nervous when I look at the list of side effects. I am running out of options(nothing seems to work for long) though so I am bound to cave and accept the prescription.
Have you tried other daily medications for migraines?
If you haven't, I'd run through all other options first. I got some relief for migraines, but had horrible side effects -- suicidality and suicidal ideation being the worst. I'd never go back on it if there were other options available.
So far two different beta blockers, Triptans, and on a trial of amitriptyline right now. Not much luck so far.
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It may not be much help right now, but there is hope on the horizon for migraine sufferers!
https://mobile.nytimes.com/2018/05/17/health/migraines-prevention-drug-aimovig.html?smtyp=cur&smid=tw-nytimes0 -
It may not be much help right now, but there is hope on the horizon for migraine sufferers!
https://mobile.nytimes.com/2018/05/17/health/migraines-prevention-drug-aimovig.html?smtyp=cur&smid=tw-nytimes
I was actually reading that while in the doctors office today. I have not checked if it is coming available in Canada as well..,
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My neurologist recommends butterbur which is a supplement you can find at a health store. Here's a write-up from the NIH: https://nccih.nih.gov/health/butterbur
Also, you have to drink LOTS of water because it helps with the pins and needles as well as preventing kidney stones.
I'm asking my neuro for Botox. Thanks for the tips!1 -
leonadixon wrote: »Whitezombiegirl wrote: »leonadixon wrote: »I took Topomax many years ago for chronic migraine. I lost 10 pounds in about a month. Food all tasted different and not enjoyable (which I did NOT mind at all). The side effects others have mentioned made me stop the medication. It was not worth losing my sanity over. I was forgetting things/words. I would forget what I was doing, even while driving. I also lost feeling in my arms, which was also scary. I had small children at the time, and could not deal with these side effects.
I realize you are not necessarily asking about migraines, but I am now at my 3rd injection of Botox after trying many medications and I have not had a migraine since December of 2017. That is crazy and unheard of for me. Good luck while you figure out what works best for you!
I've been getting botox for migraines 3-4 times a year for about 4 years. It's pricy but worth every penny for me.
I'm lucky that my insurance is covering it. It is very pricey, so my doctor had to build a case for it. I have never gone this long without a migraine. It's beyond amazing for me too!
I've seen commercials for Botox for migraines and have been curious. Thanks for sharing.
Good point about getting your doctor to build a case for you. While regular migraines are not an issue for me, I have had other medical concerns for which I have had to present a case to my doctor, who then has helped me out beyond routine medical care.
And now I'm with the VA, and getting medications not in the formulary is tricky. But when I do my research and present a good case, they eventually help me out. I've learned to be persistent and patient.0 -
youngmomtaz wrote: »collectingblues wrote: »youngmomtaz wrote: »Bump for interest. My doc is pushing this for my migraines but it makes me nervous when I look at the list of side effects. I am running out of options(nothing seems to work for long) though so I am bound to cave and accept the prescription.
Have you tried other daily medications for migraines?
If you haven't, I'd run through all other options first. I got some relief for migraines, but had horrible side effects -- suicidality and suicidal ideation being the worst. I'd never go back on it if there were other options available.
So far two different beta blockers, Triptans, and on a trial of amitriptyline right now. Not much luck so far.
I found magnesium to be very helpful. Might be worth discussing that with your doc as well.
Depakote is also supposed to be successful. I started getting weird side effects on it (apparently I'm that <1 percent of users who get leg/muscle weakness), so it wasn't worth staying on, but I did have some relief while I was briefly on it.1 -
collectingblues wrote: »youngmomtaz wrote: »collectingblues wrote: »youngmomtaz wrote: »Bump for interest. My doc is pushing this for my migraines but it makes me nervous when I look at the list of side effects. I am running out of options(nothing seems to work for long) though so I am bound to cave and accept the prescription.
Have you tried other daily medications for migraines?
If you haven't, I'd run through all other options first. I got some relief for migraines, but had horrible side effects -- suicidality and suicidal ideation being the worst. I'd never go back on it if there were other options available.
So far two different beta blockers, Triptans, and on a trial of amitriptyline right now. Not much luck so far.
I found magnesium to be very helpful. Might be worth discussing that with your doc as well.
Depakote is also supposed to be successful. I started getting weird side effects on it (apparently I'm that <1 percent of users who get leg/muscle weakness), so it wasn't worth staying on, but I did have some relief while I was briefly on it.
I do high dose magnesium, b vitamins, have done butterbur, feverfew, 5htp. The honest to goodness only relief I get is eating keto. But I have no willpower and can’t stick to it. And it is hard when I am in a migraine cycle because on the days I feel good I still have to somewhat ration my energy and often cooking and meal prep is the last thing on my list.
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Whitezombiegirl wrote: »leonadixon wrote: »I took Topomax many years ago for chronic migraine. I lost 10 pounds in about a month. Food all tasted different and not enjoyable (which I did NOT mind at all). The side effects others have mentioned made me stop the medication. It was not worth losing my sanity over. I was forgetting things/words. I would forget what I was doing, even while driving. I also lost feeling in my arms, which was also scary. I had small children at the time, and could not deal with these side effects.
I realize you are not necessarily asking about migraines, but I am now at my 3rd injection of Botox after trying many medications and I have not had a migraine since December of 2017. That is crazy and unheard of for me. Good luck while you figure out what works best for you!
I've been getting botox for migraines 3-4 times a year for about 4 years. It's pricy but worth every penny for me.
I get botox as well as taking Topomax, cymbalta, and a handful of supplements my migraine doc recommended.
It's enough to manage my migraines for 2 months out of 3 and keep them at a dull roar... I can take a compazine and be fine. That third month towards the end of the botox cycle is just awful though, and I get slammed with them and need my rescue med pretty frequently. Since I don't tolerate triptans, I have to go old school and use injectible DHE quite a bit as well as the compazine.0 -
It may not be much help right now, but there is hope on the horizon for migraine sufferers!
https://mobile.nytimes.com/2018/05/17/health/migraines-prevention-drug-aimovig.html?smtyp=cur&smid=tw-nytimes
I was just reading about that. From 8 down to 5 didn't really impress me as much as the results I get from botox, tbh. At least compared to the results I get from botox while it's being effective for me. I have 2 good months out of every 3. That's better than what that drug would get me from the looks of it.
I have an appointment with my neurologist at the end of the month, and the practice I go to is a research center. I'm sure the new drug will come up when I see him.0 -
kshama2001 wrote: »leonadixon wrote: »Whitezombiegirl wrote: »leonadixon wrote: »I took Topomax many years ago for chronic migraine. I lost 10 pounds in about a month. Food all tasted different and not enjoyable (which I did NOT mind at all). The side effects others have mentioned made me stop the medication. It was not worth losing my sanity over. I was forgetting things/words. I would forget what I was doing, even while driving. I also lost feeling in my arms, which was also scary. I had small children at the time, and could not deal with these side effects.
I realize you are not necessarily asking about migraines, but I am now at my 3rd injection of Botox after trying many medications and I have not had a migraine since December of 2017. That is crazy and unheard of for me. Good luck while you figure out what works best for you!
I've been getting botox for migraines 3-4 times a year for about 4 years. It's pricy but worth every penny for me.
I'm lucky that my insurance is covering it. It is very pricey, so my doctor had to build a case for it. I have never gone this long without a migraine. It's beyond amazing for me too!
I've seen commercials for Botox for migraines and have been curious. Thanks for sharing.
Good point about getting your doctor to build a case for you. While regular migraines are not an issue for me, I have had other medical concerns for which I have had to present a case to my doctor, who then has helped me out beyond routine medical care.
And now I'm with the VA, and getting medications not in the formulary is tricky. But when I do my research and present a good case, they eventually help me out. I've learned to be persistent and patient.
We had to build a case to the point I actually had to be admitted to the hospital with a migraine and put on IV meds before insurance would cover me for botox. I had to work my way through a bunch of different drugs, try them, and have them fail. It was a very long slog.0 -
collectingblues wrote: »youngmomtaz wrote: »collectingblues wrote: »youngmomtaz wrote: »Bump for interest. My doc is pushing this for my migraines but it makes me nervous when I look at the list of side effects. I am running out of options(nothing seems to work for long) though so I am bound to cave and accept the prescription.
Have you tried other daily medications for migraines?
If you haven't, I'd run through all other options first. I got some relief for migraines, but had horrible side effects -- suicidality and suicidal ideation being the worst. I'd never go back on it if there were other options available.
So far two different beta blockers, Triptans, and on a trial of amitriptyline right now. Not much luck so far.
I found magnesium to be very helpful. Might be worth discussing that with your doc as well.
Depakote is also supposed to be successful. I started getting weird side effects on it (apparently I'm that <1 percent of users who get leg/muscle weakness), so it wasn't worth staying on, but I did have some relief while I was briefly on it.
Magnesium is one of the supplements my neuro recommends. Also riboflavin, CoQ-10, and Butterbur.0 -
I've been on topamax for a year and Half now for my Chiari, I didn't start losing weight until I started counting my calories and working out. Topamax did help me get off sodas because it made them taste Horrible!!! I'm on 75mg my neurologist wanted to bump me up to 100mg, but they call it the stupid pill and it does make me very confused some days. So I'm holding off as long as I can. I took a maintenance break for about 4-5 months and managed to stay at the same weight, so I really don't think topamax has anything to do with my weight loss. Maybe just quitting the soda's at the beginning was a big help with losing some weight?0
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Topamax did nothing for my migraines
and actually made me put on weight! I've tried all the preventatives and just stuck with the triptans to get rid of the migraine when it decided to show its face.
I've taken nortriptyline for just over 2 months now and its really helped to reduce the frequency of them, like i got my first proper bad one today..i can put up with that as its the first bad one in around 10 weeks!
It does give you constipation though so that really scuppers my numbers when i'm losing weight as you know you've lost weight but your bowel is keeping you heavier!
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