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Old 10-14-2009, 09:17 PM   #1
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punkycat HB User
Honest opinions of Topamax required.

Hi,
I have been on Inderal (80mg daily) for 9 weeks and although it is the only drug that has ever worked against my migraines (and boy did it work beautifully!!!!), I am currently weaning off them due to the side effects. I am seeing a specialist in 2 weeks time and I am going to broach the subject of Topamax. Can anyone tell me about their personal experiences of this drug. Whether the benefits outweighed the side effects/risk especially in regard to eye problems. I have previously tried all the triptans (spectacular failure), cafergot (also failed completely), sandomigran (too many side effects) and all the over-the-counter painkillers that are pretty much useless against migraine.
Regards,
Linda

 
Old 10-15-2009, 02:09 PM   #2
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patty kay HB User
Re: Honest opinions of Topamax required.

Linda,
I've been on Topamax for three weeks. Before the topamax, I have tried immitrex, maxalt and my insurance wouldn't cover relpax. The immitrex made my migraine and eye pain worse and same with the maxalt. I started taking 25 mgs of topamax and the first day it worked. Then it just stopped working and my doctor said to just keep taking it, so I just kept at it, even though the pain was unbearable. About a week later, I called my doctor and told her it's not working and asked her what to do and she said to take two, so I did that. I would take two at bed time as instructed.
About a week after taking two of the topamax every night, it did not work and I got really impatient, and I called my doctor, and she said to take three.
A few days after I started taking three of them, I started experiencing strange symptoms that I didn't think had anything to do with the topomax. Symptoms like forgetfull ness, confusion, shaky legs, trouble spelling, trouble doing more than one task at a time, tingly face, hands, neck and chest. I was really freaking out because to me, these symptoms sounded a lot like Multiple Sclerosis, which is what my mother has.
Anyway, I just found out today that the topomax is causing all these symptoms and I also just had an MRI today because I thought I had MS. I have been suffering from excruciating progressive migraines for about a year now and when those symptoms popped up, I was really confused, I had no idea it was the topamax, I didn't research it as well as I thought I did. I wish you luck, but as for me, I do have an over active thyroid and that might be the cause for my migraines, I have to search that now. I just caution you if you try the topamax, expecially at a high dose, it makes you feel likeyou have nerve problems.
hope I helped :]
Patty Kay

 
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Old 10-15-2009, 03:43 PM   #3
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punkycat HB User
Re: Honest opinions of Topamax required.

Thanks Patty Kay,
I am very wary of taking any type of medication at high doses. If the neurologist thinks I would be a candidate for Topamax, I am goigng to take the minimum recommended dose for migraine. I really wish the propranolol (inderal) did not have the side effects because it is the only medication that has worked, but it's no good if you have to cut your eating down so drastically and have your sleep disturbed every night. Like you, I have been on many different migraine meds, but they are the only medication I take as I am a bit anti-medication.
Regards,
Linda

 
Old 11-03-2009, 09:44 AM   #4
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busymommy HB Userbusymommy HB User
Re: Honest opinions of Topamax required.

I've taken Topamax for years now. I'm up to 50 mg. in the am and 50 in the pm. It takes some time to get used to. Tirate up. Don't rush. Do what the makers of Topamax recommend. You may have side effects but give it time. If you don't try it, you won't know if it's your miracle drug. It you can't deal with it, you can simply stop, right? It really helped me so I'm glad I took the plunge. I've done this with other things. I read all the horror stories and think I won't try it, but all the people who like it don't write the horror stories, get it? Give it a try. You can stop it but give it a fair shake first.

 
Old 11-03-2009, 10:44 PM   #5
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Re: Honest opinions of Topamax required.

Hi busymommy,
It's so true that we can be scared off by all the side effects. I know the internet drives doctors mad because we all get on it and scare ourselves stupid before we even speak to the professionals. I have been on Topamax 2 x 25mg for exactly a week now and my head has not exploded and I have had not one nasty side effect. The only effects that I have had are slight tingling and numbness in my hands and slight dryness in my eyes. No confusion, sedation, etc, etc, etc. So far, so good! Hopefully it will prevent migraines and then I will be a very happy lady!
Regards,
Linda

 
Old 11-04-2009, 08:41 AM   #6
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busymommy HB Userbusymommy HB User
Re: Honest opinions of Topamax required.

Good for you, Linda. Keep it up. I had some side effects such as the tingling, and forgetfulness, but your body will get used to them, we are wonderful machines! Best of luck with the Topamax.

 
Old 11-04-2009, 11:51 AM   #7
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soapies777 HB User
Re: Honest opinions of Topamax required.

My mom took it and got lost driving, I took it just felt a little spacey. My husband took it for a few years and he was fine.

 
Old 11-10-2009, 10:29 AM   #8
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Re: Honest opinions of Topamax required.

Hi, I have been on Topamax for about 7 mths now, I was started on 100 mg. I love it. The only side affects i notices were the weight loss, loved it and the tingling in hands and feet but that soon went away after a week or so. I was getting horrible migraines to the point of going to the E.R. because nothing I my PM doctor gave me was helping. I also get Facet injections every 8 weeks, those work too. Everyone is differnt though. Good Luck.
Jess

 
Old 11-10-2009, 04:42 PM   #9
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Re: Honest opinions of Topamax required.

Quote:
Originally Posted by jessicalynn13 View Post
Hi, I have been on Topamax for about 7 mths now, I was started on 100 mg. I love it. The only side affects i notices were the weight loss, loved it and the tingling in hands and feet but that soon went away after a week or so. I was getting horrible migraines to the point of going to the E.R. because nothing I my PM doctor gave me was helping. I also get Facet injections every 8 weeks, those work too. Everyone is differnt though. Good Luck.
Jess
I'm on 2 x 25mg daily. I hae been on them for just over 2 weeks now and the only lingering side effect is the dreadful taste of carbonated drinks and the lack of hunger. It's a bit too soon to tell what effect they are having on my migraine, but I haven't had one!
Regards,
Linda

 
Old 11-11-2009, 10:37 AM   #10
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silverkitten HB User
Re: Honest opinions of Topamax required.

Hi! I took Topamax once and my heart rate immediately sped up and I had to stop taking it. My doctor said that it was an unusual case, but my doctor said a lot of things and I still don't have a prescription that helps my migraines. It can't hurt to try it, though.

 
Old 11-18-2009, 02:17 PM   #11
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punkycat HB User
Re: Honest opinions of Topamax required.

I have been on Topamax for nearly 4 weeks now (I think). I have noticed that my hunger has been drastically reduced. I am a slim person anyway, but I will get to the end of the day and realise that I have hardly had the desire to eat anything. Carbonated drinks are definitely not worth drinking anymore because of the dreadful taste, but other than that, everything tastes pretty much the same. I have had minimal side effects which has been fantastic, but this hunger reduction is very marked and quite strange.
Regards,
Linda

 
Old 11-18-2009, 02:31 PM   #12
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Re: Honest opinions of Topamax required.

It will get better, just hang in there. I remember the soda pop tasting vile but it's funny because now it tastes just like before, normal. These side effects wane with time and you won't even remember having them. Just kind of force yourself to eat, especially if you are slim, don't lose weight and have to stop the Topomax because you forget to eat and lose too much weight. Eat some burritos!

 
Old 11-25-2009, 11:32 AM   #13
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ahhchoo HB User
Re: Honest opinions of Topamax required.

I take Topamax for epilepsy, but I also have migraines. I take 400mg/day, much more than required more migraine prevention. I've been taking it for 7 years...and I haven't had a migraine for 7 years. I used to use an Imitrex auto-injector when I got a migraine, which got rid of the migraine in about 20 min. I have some issues with my appetite, especially if I get sick, but aside from that not many problems.

 
Old 11-27-2009, 12:04 PM   #14
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Re: Honest opinions of Topamax required.

Well - sorry to give you the BAD news but...... I just registered on here today because I was trying to find information about HAIR LOSS from Topamax. I've been on it for about ten months now. At first it was a MIRACLE drug! I've had hormonal migraines my entire life (I'm a female in my mid 40's) and in the past 10 years or so they've just gotten worse to the point where I was getting them about 3 or 4 times a week. The usual story where I tried everything and nothing worked. Until Topamax! The migraines didn't totally stop, but it cut them down to at least a third of what they were (both in frequency and severity). I also had the confusion side effects (I would HIGHLY suggest that you not drive for the first few days you are on it if at all possible. I actually drove THROUGH two stop signs! They just "didn't register", you know? This "fogginess" went away after a few weeks though) Oh, also, do NOT drink caffeine within a few hours of taking your dosage when you are first on it. You will feel like you are jumping out of your SKIN. Thw whole "word searching" thing is a pretty annoying (and never did go away). You'll try to think of a word for something and you just CAN'T. It's that whole "it's on the tip of my tongue" feeling. Makes you feel like a moron (to the point where I actually couldn't remember the word for TABLE one time - no lie - I was saying "large flat thing with legs that holds objects"). Oh, weight loss! AMAZING! I had been on ANOTHER drug that made me gain a huge amount of weight - with the Topamax I started losing weight immediately. I lost a steady 2 pounds a week for the first 6 or 7 months before it levelled off (40 pounds in total). I am now back to (almost) my normal weight.

Okay, so all of that was worth it to get rid of the headaches until...... the hairloss started. At first it was nothing. I noticed a little bit more hair in my hairbrush (plus I have thick hair so I didn't notice any change). But about two months ago (and this seems to be the magic number - seven months on the drug) - HUGE amounts of hair come out every time I wash it, brush it etc. I haven't had a hair cut in MONTHS and my hair looks EXACTLY the same as it was then! It's to the point where I now HAVE to go off the drug (and I don't know WHAT I'm going to do about my migraines). So, yes, it works GREAT for migraines and it is KILLING me that I have to go off it because it's the only side effect that is really bothering me but..... I don't want to be bald and that's how bad it's getting. I've read that the hair DOES grow back after you go off it though thank god...... so if you do go on it, it might be okay at FIRST for the hair loss, but it seem the 7 month mark is the "magic time". If it's going to happen, that seems to be when. Good luck! Hope it works for you!

Last edited by Anne Thrope; 11-27-2009 at 12:07 PM.

 
Old 11-28-2009, 01:17 PM   #15
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Re: Honest opinions of Topamax required.

Quote:
Originally Posted by Anne Thrope View Post
Well - sorry to give you the BAD news but...... I just registered on here today because I was trying to find information about HAIR LOSS from Topamax. I've been on it for about ten months now. At first it was a MIRACLE drug! I've had hormonal migraines my entire life (I'm a female in my mid 40's) and in the past 10 years or so they've just gotten worse to the point where I was getting them about 3 or 4 times a week. The usual story where I tried everything and nothing worked. Until Topamax! The migraines didn't totally stop, but it cut them down to at least a third of what they were (both in frequency and severity). I also had the confusion side effects (I would HIGHLY suggest that you not drive for the first few days you are on it if at all possible. I actually drove THROUGH two stop signs! They just "didn't register", you know? This "fogginess" went away after a few weeks though) Oh, also, do NOT drink caffeine within a few hours of taking your dosage when you are first on it. You will feel like you are jumping out of your SKIN. Thw whole "word searching" thing is a pretty annoying (and never did go away). You'll try to think of a word for something and you just CAN'T. It's that whole "it's on the tip of my tongue" feeling. Makes you feel like a moron (to the point where I actually couldn't remember the word for TABLE one time - no lie - I was saying "large flat thing with legs that holds objects"). Oh, weight loss! AMAZING! I had been on ANOTHER drug that made me gain a huge amount of weight - with the Topamax I started losing weight immediately. I lost a steady 2 pounds a week for the first 6 or 7 months before it levelled off (40 pounds in total). I am now back to (almost) my normal weight.

Okay, so all of that was worth it to get rid of the headaches until...... the hairloss started. At first it was nothing. I noticed a little bit more hair in my hairbrush (plus I have thick hair so I didn't notice any change). But about two months ago (and this seems to be the magic number - seven months on the drug) - HUGE amounts of hair come out every time I wash it, brush it etc. I haven't had a hair cut in MONTHS and my hair looks EXACTLY the same as it was then! It's to the point where I now HAVE to go off the drug (and I don't know WHAT I'm going to do about my migraines). So, yes, it works GREAT for migraines and it is KILLING me that I have to go off it because it's the only side effect that is really bothering me but..... I don't want to be bald and that's how bad it's getting. I've read that the hair DOES grow back after you go off it though thank god...... so if you do go on it, it might be okay at FIRST for the hair loss, but it seem the 7 month mark is the "magic time". If it's going to happen, that seems to be when. Good luck! Hope it works for you!
Hi Anne,
Thank you for your reply. I have been on it for just over 4 week and I am now on 2 x 50mg daily. I have been driving and drinking caffeine since day 1 and have had no problems. The only side effects that I have encountered so far have been very minor tingling in my hands and feet. The feet subsided after a couple of days and I still get some tingling in my hands. Carbonated drinks taste pretty awful and my appetite has reduced drastically. The appetite reduction is the one I have to watch as I am already slim. I did have some mood variation in the first couple of weeks, but I was aware that it was the drug and I made sure to keep an eye on it.

Can you tell me what dosage you are on? Side effects with Topamax seem to be very much dose related. My neurologist told me that the serious side effects seem to manifest in his epilepsy clients rather than his migraine clients and even then, he finds Topamax to be quite a safe drug. The hair loss effect is very interesting and I will ask my neurologist about it when I see him for my 6 week follow up next week. I will also ask my brothers (doctors) about it.

I should add that I am already noticing that it is working beautifully in stopping my migraines. I am also a woman in her mid forties, but my migraines were not as bad as yours. I suffer classic menstrual migraine. One migraine mid cycle and one migraine on the first day of my period. Both leave me bedridden for at least 6 hours and last approximately 36 hours per migraine. I also can get random migraines if I am under stress. I have a dual family history.

Thank you again for taking the time to reply to me.

Kind Regards,
Linda

 
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