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Posted 6/17/2006 6:26 PM (GMT 0)
Any body got any feed back on this? I have read about the side effects of topamax and im afraid to try it.
Posted 6/18/2006 3:04 AM (GMT 0)
I am on it. I wont lie the side effects at first are are kinda hard but for me I could tell my migraines were getting better so I figured the side effects were worth it compared to the migraines. Plus I figure if I didn't stick it through the side effects with this med I would have to stick it through the side effect of another. Keep in mind that not everyone reacts the same to each meds cuz I have read what others have said they went throuugh with Topamax & I never had a problem with but I had other problems then they did & some people had the same problem as me. Topamax works well for me as long as I remember to take it every day. My suggestion is to up you doses up slowly. That is what I did & it help ease the side effect for me. My Dr. told me to up the dose every week but I waited an extra week before doing so. Good luck
Posted 6/18/2006 1:24 PM (GMT 0)

I'm on it too, but only starting at 25mg.  I have to call my doctor this week and I believe we're upping it to 50 mg based on the past 2 month trial of the lowest dose.  I still got migraines this month (mine are currently mostly hormonally based - it's a perimenopausal situation at this point) although I do have to say they were not as severe, but I did get the same amount of them the week I expected them to show up.

As for side effects I have experienced some but as I'm on it longer they seem to have evened out.  First you may have heard that it makes soda taste funny.  This is true!  Thankfully I am not much of a soda drinker so this hasn't been an issue but it was quite a shock to me to find this out. 

It also seems to have made my appetite drop just a bit, not a lot, but I do think I'm eating a bit less.  This too is not a problem, since I'm somewhat overweight and can afford to lose a good 25 pounds.  This side effect if it were to continue would be most welcome in fact.

The two that are bothersome are that I do have occassional tingling in my feet, they fall asleep for no reason at all at different times during the day.  However, in the last couple of weeks this has been happening a lot less than the first couple of weeks I was on it, so that's encouraging.

Also, I was experiencing 'heart flutters".  My heart was having occassional racing feelings.  Again, not all the time, a couple of times a day but it was unnerving.  I have no history of heart issues at all.  I called the doctor about this one because this was enough to worry me but he assured me it was a side effect.  Since it was not happening enough to effect me in any real way, I decided to continue with the medication for the time being.  This side effect too, in the last week or so, has nearly stopped completely.  There are days where it does not happen at all.

So all in all, I'm tolerating it just fine but I am on a very low dose.  My doctor is very cautious about how to increase it, which I appreciate.  We'll see how it goes when he bumps me up to the 50 mg next week.  I have not experienced any mental fog, or anything which makes me feel impaired in my thinking at all so far either.  I do think it may be helping me sleep somewhat better which is an appreciated effect.  Hopefully, that will continue.  For my situation he does not feel that I'll need to be on a higher dose than 50 mg anyway.

While I'm not a very active poster here yet, I do read through the board so please do keep us posted on your experience.  I think it's important for all of us who suffer with migraines to read about others. 

Laurie

Posted 6/19/2006 7:25 PM (GMT 0)
smurf  I also, have tryed Topamax, I was taking 100mg a day, I took it for month then decided i couldn't handle the side affects.

I also had the tingle feelings in my hands, arms, legs and feet; trouble speaking; trouble sleeping at night; and no interests in sex, which is bad for my husband especially since we havn't even been married a year yet. nono   

But i talked to my family doctor since my Neuo, was no where around, and we lowering my doeses of Topamax to 50mg , then to 25mg(which i am on now, and i can tell, ), and going to try a anti-depressent. Kinda scared about it, but it is a low dose, she says. I start it tonight so wish me luck.

I also started a part time job that is cleaning houses a few hours each day. Even on the day where my head hurts, i am wore out at night and ready to give in.

Rebecca Wilson

[email protected]

 

Posted 6/21/2006 2:38 PM (GMT 0)
I have migraines about 2+ week and have been on Topamax for a while now. Honestly, I would not reccommend it. I am up to the max. on dosage and still have my migraines regularly. I've tried about everything though--I'm willing to try anything to ease the pain, but nothing has worked yet!
Posted 6/23/2006 1:52 PM (GMT 0)

hi

  i have been on topamax for over a year just up the dose to 125 iam 44 and have had headaches for all of my life. i still have some but not daily so the side effects are well worth it and most of them go away i still have the tingling in my hands but not alot and not daily.

 at first i lost some weight soda did not taste good any more i no longer want to eat candy like i used to but i dont have a headache everyday.

i would take it again in a heart beat wish i had it sooner   

carolyn    

Posted 7/6/2006 1:02 AM (GMT 0)
Hello,

I have been taking Topamax for about 11 months - It has been very effective for me.  It was VERY hard at first, even tho I was on only 25mg to begin with.  My doctor seemed to want to bump my dose up much, much faster than I wanted to go after reading a lot of personal accounts online about Topamax for migraines, so I kind of had to fight with him about how fast I did it.  Bottom line is the medicine won't work if you end up not taking it because of the side effects, and I really needed this to work.  So I did it slooooowly.  The side effects I had were not good, but they have gotten better, even though the dose has gone way up (I am currently at 150/day in a divided dose).  The worst for me was not being able to think clearly at work, not being able to speak in meetings like I had a clue.  I really think I have experienced what it must be like to get old and kind of 'lose' yourself.  My access to my own temporal lobes seemed to be cut off...I lost the words for common things a lot.  I remember trying to come up with the phrase 'money order' at work on the phone with my boss...after SHE figured out what I was trying to say and named it, I had to say it again 15 seconds later and I couldn't remember what it was called again.  Duuuuhhh.  It was awful.  But it did get better.  I suggest letting people know what you are doing so they don't think you are on street drugs (Topamax has been called 'Stupamax' and 'Dopamax' because of this side effect) - chances are they prefer you try to get help for your migraines than continue to miss work because of them. Then again, you may not have the same problems I had at all- I guess that is the beauty of reading all of these personal experiences.  Everyone's account is different.

I did have the 'emotional instability' problem that is sometimes reported - feeling like bursting into tears all the time.  It never made me sad for long, just really sensitive. That is gone.  I guess if you are prone to depression, the coupling with an antidepressant might be a good idea, if it is in effect in your system by the time you start Topamax. 

I also had a problem falling and staying asleep on this medicine, but that seems to have completly gone away, even when I increase my dose. I hear that most people have the opposite problem with this medicine - they are sleepy around the clock, especially if they start at a high dose.  I had and do sometimes still have the tingling in my hands and feet.  When I increase my dose I will temporarily have some confusion again, as well as more tingling, maybe stomach problems.  I sometimes have a couple of days of running for the bathroom, and that isn't fun. I did seem to not want to eat as much, which was a good thing for me, as I need to drop some weight, which I believe it helped me do.  I hear it does not always do this for everyone.  Anything carbonated still tastes horrible to me - for instance, I totally can't tell the difference between diet and regular soda - they both taste equally disgusting to me.  I used to be a diet Coke expert.  I did not seem to have any negative sexual side effects.  ; ) 

Overall, this medicine has really, really helped me.  I still get headaches sometimes, but much less frequently and they seem to be way less severe.  It is kind of like I know I should be hurting more when I have one, but for some reason, I am not.  It is a godsend.  I would recommend it to anyone who suffers with migraines and isn't finding relief anywhere else.  Treating the symptoms just isn't effective for me, and the abortive medications usually wouldn't catch my headaches early enough.  I would be happy to answer questions about my experience - [email protected].  Good luck to anyone looking into this medication.  

Carol

Posted 7/6/2006 5:30 PM (GMT 0)
I've been on Topamax for six months now for chronic daily headache, slowly escalating to a dose of 150 mg every night. I've had minimal side effects -- lots of drinks and foods tasted strange at first, some low-grade headaches for the first couple of months -- but they've mostly disappeared. Soda still tastes strange. I've lost 15 pounds, about half the weight I put on thanks to Elavil.

It took about 4 months to fully kick in, but the Topamax is finally helping -- the most effective medication I've found in 17 years of daily headaches. I was reluctant to try it after reading about all the side effects, but I decided it was worth giving it a try and I'm very glad I did. My neurologist has suggested increasing my dosage up to 200 mg depending on the side effects and the results I'm obtaining. (I'm also happy to have found a truly great headache specialist at last -- she actually listens to and respects my opinions!!)

Don't get too scared off by other people's experiences with side effects; every person will react differently and you owe it to yourself to try whatever offers the best chance at helping your headaches. Just go slowly on increasing (or decreasing) your dosage, and be patient in waiting for results.
Posted 7/22/2006 7:53 AM (GMT 0)

I have been on Topamax for about 11 months not including the month i couldnt afford it because of no insurance, the only side affects ive experienced is the tingeling feet and loss of appetite.

Some things taste different. I have lost 20 pounds and i find that every time i eat i have a bowel movement which i guess is why i'm losing weight , i don't know. It seems like no more than 15 or 20 minutes after i eat, i'm in the bathroom.

But compared to as many migraines i was having, those side affects are more than worth it to me!

Posted 7/22/2006 8:12 AM (GMT 0)
kymark do you have non stop headaches? was the pain always there or not??
Posted 7/22/2006 6:29 PM (GMT 0)
I have been on topamax along with 2 other meds and it has really helped. My biggest side effect is really vivid dreams and restless sleep. We combat that with Adivan or sometimes Ambien. Don't be scared of it and give in a good amount of time to take effect and hopefully it will work for you. If not, ask your doctor about trying it with a combo of some thing like a BP med and something like nortryptilyne.
Posted 7/23/2006 6:35 AM (GMT 0)
I started on Topamax a month ago and the side effects for me have been that my IQ has dropped by 50 points. What I want to say does not come out that way and brain fog is real bad. Everything I eat or drink tastes like ditty dishwater BUT that has led to weight loss!!!! and the one that bothers me the most is the tingling in my hands and feet, but my daily migraines have been reduced greatly
Posted 7/26/2006 12:33 PM (GMT 0)
I have been on 200 mgs in am only for 2 years...Can't take at night cause it causes me to have severe nightmares..But it does lessen my daily pain down some...I take it with a combo with 2 narcotics...I have a inoperable aneurysm that is pulsating on the nerves in my brain behind my left eye...It is So very painful...I've had this now for 5 and half years..With an attempted surgery when the aneurysm started to grow..But they put in the stent and I had a stroke and was unable to put in coils..So blood is still reaching the aneurysm with every heart beat...My head pain has been constant for over 5 years...Never has been under a 4...But has been a 10 many times....But topamax does work for me...I just had to tirate very slowly to get to 200 mgs. It took me a couple of months...Because of the side effects...Hugs, Cindy

Posted 7/26/2006 2:25 PM (GMT 0)
cleopatra84-

My pain isn't constant, but it is daily -- at some point every day (usually for more than 3/4 of the day) I have a low-grade headache (maybe a 3-4 on a pain scale of 10). Then, every couple of weeks, I get a 2 or 3 day cycle of constant 7-8 range pain -- these are all pressure/tension headaches. If I wake up with a headache, it's a bad sign. For the most part, I can function with my headaches, but it makes it pretty hard to mentally concentrate (and I'm a college professor, so that's a bit of a problem!)

The Topamax has pretty much eliminated the more severe headaches and reduced the intensity of the daily headaches by half. You can see why that makes me a pretty big fan of the drug!

Unfortunately, I've very recently started having kidney stones, which are a possible side effect of Topamax. I'm hoping it's only because I was also taking a medicine to prevent altitude sickness during a recent trip to the Andes, and I can stay on the Topamax -- I see a urologist this afternoon. Kidney stones are far more painful than any headache I've ever had, although some of the headaches I've read about on this message board sound just as bad or worse.
Posted 7/27/2006 2:00 PM (GMT 0)
A quick update - the kidney stones are almost certainly a result of the Topamax. So now they've put me on potassium citrate, which is supposed to stop the formation of calcium stones caused by the Topamax. I'm keeping my fingers crossed that this works -- I really don't want to quit the Topamax!
Posted 7/27/2006 8:42 PM (GMT 0)
skull  Topamax was always "Dopamax" for me.  I've had migraines since childhood, and the frequency has just increased over time.  I now get 2/3 per week, and average at least one trip to the ER weekly as well.  I have tried EVERY migraine preventative that has come out over the past thirty years.  My family doctor first put me on Topamax, starting at 25mg per day and slowly titrating up to 200mg per day.  It still was not help, but I felt like I had brain damage.  I couldn't finish sentences, think of words, and had no short-term memory.  I went to a neurologist, whose advise was to up my dosage to 400mg per day.  Then I was truely brain dead.  And as a real kick in the butt, it never had any effect on the frequency of my migraines. nono

I have heard that it helps some people, but I hear more negative comments than positive ones.  The only way to know if it will help is to give it a try. 

Best of luck,

Leigh Ann cool

Posted 8/5/2006 5:57 PM (GMT 0)
I've been on Topamax a very short while, and have been reading up on people's experiences (I've had migraines my whole life and recently, they've started to get worse in intensity and amounts) and noticed a trend with two side effects: "weight loss" (or the loss of appetite) and "memory problems".

I've noticed that a lot of folks are experiencing these hand in hand... as an athlete, I'm really aware of my food intake, when I eat, how much, etc, so even when I'm not hungry, I know I have to eat or I'll crap out during my performance time. I also know that when you don't eat, one of the side effects is moodiness, memory problems, and some motor skill problems. I'm wondering if some of the memory problems may be in direct connection to Topamax users just not eating enough. Because to be honest, I really haven't noticed myself turning into any more of an idiot than I was before I started taking it. ;-)

Seriously though, could this side effect be a hidden symptom of malnutrition, at least for some users?

Thanks!
Jules
Posted 8/6/2006 1:06 PM (GMT 0)
kymark, hoping you aren't having any more stones...They are painful !!! When I first started Topamax I had many months of thinking problems...But after awhile, that just went away....At first I did loose 30 pounds, but I gained that on those other many drugs the Docs put me on...Mainly amitrypiline...sp+..I know I spelled that wrong...But it was a antidepressant, an old one. And all it did for me was crave chocolate and have severe nightmares..And when I reported this, they kept upping the dose...It was just a total nightmare for me..Then they thought they would put me on it's cousins.....Did the same thang......A nortrypline +sp....I have been on over 50 prevenratives....And I don't have migrains....I have a aneurysm pulsating on the 5th cranial nerve..For the last 5 years....And it's damaged beyond repair....Some Docs just don't get it...Hugs all, and Kymark hope your feeling better, Cindy
Posted 8/6/2006 8:51 PM (GMT 0)
Hubby was on 200mg of topamax.  He called it dope-a-max.  He had the same symptoms as Cranky 1.  He has been in bed since Wed.  Nothing seems to work.  I am happy for those that it does help.  I've got so many questions and don't know where to post.  Hubby has had HA for 25 years.

Posted 8/28/2006 7:19 PM (GMT 0)

Topamax seemed to be working for me for a little over 2 months and then I had 2 migraines in 5 days. I'm so disappointed. I really thought I was done with them. They were the best 2 months I'd had in a long time. I was on 75 mgs. so my doctor has increased my dose to 100 mgs. and I hope that works and continues to work. Has anyone else had a similar experience? If anyone has I'd like to hear.

Regarding side effects, I built up the dose slowly from 25 mgs. and had a little trouble sleeping and tingling in my hands and feets, but none of the cognitive problems so many of you have had. I've been very lucky there. If anything, I think my energy level is better, but that may be not having what I call a headache hangover a couple of time a week.

 

Posted 8/29/2006 1:25 AM (GMT 0)
I've been on 100mgs since about Oct. For the last 2 months I have been STRESSED OUT & been having problems almost daily so my neurologist upped my dose to 125mgs. 100mgs was doing fine untill I got way to stressed. I already warned my coworkers that I will be upping my meds so they are prepared for when I give them the 'dear in the head light look.'

Posted 8/29/2006 3:16 AM (GMT 0)
I have had to go off topamax because of frequent kidney stones, and the awefull cognitive effects. I would lost my way home, say the wrong words, cried all the time, was really short tempered, couldn't follow a recipe. I felt like I was going crazy. The sad thing is that it Helped SOOO MUCH. It really reduced the number. I had 2 migraines in 2 months, and I usually have 1-3 a week. I just couldn't take the kidney pain and the congnitive stuff. I'm now on Keppra, so we'll see how it works. It hasn't done anything but make my stomache hurt yet.
Posted 8/31/2006 5:05 AM (GMT 0)
Topamax has not worked for me at all, and I do not suffer from migraines, but from chronic head pain on my right. I have been taking them for a month now and I still get headaches and head pain.....my neuro told me it would take awhile before it worked, but does anyone know how long it will take to work? Two months, a year??? I don't think it is going to work, all it does for me is put me to sleep all day long.
Posted 9/1/2006 5:52 PM (GMT 0)
Jemarie-

One research study on Topamax for chronic daily headache found it took at least 3 months for the medicine to start having an effect. If you'd like to see the study, email me at [email protected].

That's about how long it took before it helped me - and that's after I reached a dose of 100 mg; I worked up slowly from 25mg. So hang in there awhile longer, if the side effects aren't too bad!
Posted 9/1/2006 6:11 PM (GMT 0)
Hi, I am on topamax as well, but I am still having migraines, I'm taking 75mg. I have been on it for about a month now. Would any of you be interested in chatting sometime in the migraine chat room? It would be great support for those of us who suffer with migraines to have someone else to talk to about our day to day lives with migraines. I have at least 2-3 migraines a week, but for the past 2 weeks have had them daily, I think it may be hormonal I don't really know. j

Please send me an e-mail if you would like to start a regular time that we could all chat in the migraine room here at healing well. hope you are all having a pain free day. [email protected]

Blessings,

Mercyme
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