Topamax Success Stories

I've read all the posts from the people who did not have success or experienced side effects on Topamax.  My doctor is putting me on 25mg/day.  I usually tolerate most (not all) meds well.  Since I know all the bad stories, I wondered if anyone had any SUCCESS STORIES to share.  I am getting a little worried and it will be nice to see that it did work for some people and it's not all negative.

I don't seem to have the severe migraines many of you have and I feel they are food related and that my triggers have changed over the past year.  While I try to get my diet under control (tannins seem to be a huge trigger for me), I need something to get out from under all these headaches.  I have had multiple migraines per week since September.  Most are multiple day.  I am able to get myself to work and struggle through.

Thanks,
Jen

I'm honestly not positive that there are success stories for Topamax, or if there are they don't look at this forum lol. I do remember reading one post saying that the Topamax helped their migraines but the side effects were severe. If I remember correctly the person was continuing the Topamax anyways.

Thanks for your comment. I am finding success stories, but I was hoping for someone here, too. I prefer no meds and have zero plans to up my dose from 25mg once a day no matter what. I am waiting to see if my ins will cover acupuncture and I would rather do that, to be honest, but in the meantime, I need to do SOMETHING. Imitrex does not work and Maxalt only takes the edge off (barely). I've tried propranolol and chiro and massage over the years. Hoping Topamax is temporary and that I get a little relief until I get this recent change in headaches figured out.

I'm in the Topamax fail group, but I've had 2 different coworkers that thought it was the best thing ever. Minimal side effects and decreases in their migraines. I hope it helps you to hear it.

Well, day one results on 25mg is that massive headache I've had since Friday (it's Wednesday) is reduced to a medium non-migraine and I am sleepy.  Not sure if the sleepy is from the med or because my head isn't pounding and I am more relaxed.  Many more days to see what ends up happening.

Hi.  I am a 43 year migraineur beginning when I was 18 years old.  In 1971 was first misdiagnosed with sinus problems and then, mercifully, in 1985 correctly diagnosed.   I have tried every 'controller' drug known with no success and Imitrex is my go-to abortive.  That said, seven years ago I was put on Topamax.  I am your success story.  I knew going in, this drug was not going to be my 'cure-all' but it has reduced my migraines from 12 per month down to 5 and sometimes as few as 3.  I take 200 mg a day.  Now as to the side effects, yes there are a few.  Topamax made me nauseous until I was titrated from 25 mg up to my present dosage.  I find I am the 'village idiot' in that my verbal skills suffered as soon as I started taking this drug.  My neuro and I spoke about it and since I am retired from Corporate life and it is not essential I be "on top of my game' every day, so be it.  This is frustrating, but a small trade-off in my opinion.  In my house we call these "topo-moments" when I am reaching for words that just won't come.   Oh, this little side-effect is worsened when under pressure.  This doesn't mean you can't speak, it just means you draw a blank when trying to come up with a certain word.  You must drink a lot of water with this med as it can cause kidney stones. (Not something I've experienced.)  The really nice side-effect was the nine pounds I have lost on this drug.  It will do that.  That was a nice change from the weight gain of some of the tri-cyclics I've tried where it packed on 7 to 10 pounds that wouldn't budge no matter how much time I spent in the weight room or cardio training.

I hope this is of some help to you.  My diagnosis is chronic refractory migraine without aura.

Kathy

Although you asked for individual success stories, what really matters is that the statistical evidence is that Topamax is one of the few medicines that actually works for migraines. It tests exceptually well in clinical trials.

Interestingly, 50mg tests no better than placebo. 100mg is the therapeutic dose. However, our bodies are different. Depending on your weight and how you metabolize the medicine, it's possible you could see results on a lower dose. I'm an average size male, and get relief from 75mg, (which has never been tested, only 50mg and 100mg were studied). So if you find that 25mg poops out on you, you should definitely ramp up to 75-100mg.

Sleepiness is a common side-effect.

-Platy

Thanks everyone. I've decided to put a hold on the Topomax. I actually "fired" my doctor. I'm going to a Holistic Internist tomorrow. I am equally hopeful and nervous (that nothing will help). I am so tired of always feeling like crap.

Can I be curious enough to ask what helped you make that decision? I've got my reasons and feelings about Topamax, but for you to ask about it, report that it was showing some improvement, and then stop the medicine and fire your neuro all so quickly has me wondering.

If it was just to pursue the holistic approach, many neuros are positive about the combination of 'Western' and 'Eastern' medicine.

Whatever you decide, please keep us in the loop. Many of us share our failures, simply because what fails for one, may help another.

Sure Sara.  First, I wasn't seeing a neuro.  She was my regular doctor.  My M's are not as severe as some have here, but my issue is that I have had 30 years of food related migraines that were pretty much under control by not eating my trigger foods.  A little more than a year ago, my M's changed in every way...frequency, duration, onset, symptoms, etc.  They are nothing like the M's from my teens and have been getting worse and worse.  I have now had a headache pretty much every day since the first week in September, with several M's a week lasting several days at times.  My doctor and I agreed that there is something in my body that has changed.  My understanding, based on my appts with her, was that I was going to go on these meds while we worked together to figure out what was causing the change in the migraines.  I had an MRI, which we agreed was just a precaution and would not show anything.  

So....after my MRI, I received a call from my doctor stating that the MRI showed "evidence of migraines" and for me to keep taking the Topamax and call her again in 6-8 weeks.  I do not want someone to throw pills at me in the hopes of managing my pain for the rest of my life when we have done NOTHING to figure out the cause of the changes.  Have my food sensitivities changed?  Are my hormones out of whack?  That kind of thing.  What I thought was going to be a medicine to manage my pain while we explored other things, turned out to be what she had in mind for me....period.  I am not waiting and I will not accept pain management as my treatment without exploring anything else!  And that is why she was fired.  

I found an Internist who practices holistic medicine.  He looks at diet, environment, and also uses traditional medicine and drugs.  I am feeling hopeful, but also nervous that it will be another dead end.  I stopped the Topamax now so as not to mask any symptoms.  If I HAVE found a doctor who is going to help me find out what is going on, I would be more open to accepting the fact (if that's what it ends up to be) that I have to be on pain management forever.  But I truly think there is something we will find about my body chemistry and maybe my food triggers.  I do believe now that tannins are a problem, where I never seemed to have an issue with them before.

I have been instructed by my new doctor to bring a list of every symptom and complaint so nothing is overlooked or missed.  The first visit will be over an hour...I know this because they have already been communicating with me via text since I made the appointment.  My previous doctor wrote me a script and basically said, see ya later.  

I am feeling hopeful.  I am also feeling lucky that I have the option to do this as I know so many others here have very debilitating M's.  I am just trying to keep mine from getting that way if there is any way possible to do that.  

Jen

Mini update. I really liked my new Holistic Internist. We are starting by checking my thyroid, adrenal, vitamin deficiencies, hormones, etc. I have a magnesium supplement (powder) he gave me to start with and I go back in 2 weeks. I had a bad headache (possibly sinus, don't think migraine) when I was there. He did acupressure for just a few minutes and I got lots of relief (headache did not totally go away). He's also sending me for acupuncture. Once I see how this is going, I will post an update. I think I made the right choice in doctor so far as well as my choice to stop my meds for now.  

Jen

Good Luck with it. I always hope that somebody finds something that works. BTW, thanks for the explanation. I'd forgotten that you were only willing to use the meds while searching for a root cause, and the reminder helped.

I can't remember if you're American, but if so, I hope you had a happy Thanksgiving! And if you're Canadian, belated wishes.

I just came off a 10-day severe migraine. The last 3 days were a steady level 9 pain with no relief from Relpax or Frova. Unbelievably painful -- never had one like this before. My neurologist has finally insisted that I try a preventative, and it's going to be Topamax for now. Starting with 25mg and going up eventually to 200 mg per day. Took my first dose last night. So far so good.

My friend has been on Topamax for years and cannot function without it. She has no side effects. She is a 3rd grade teacher so you can imagine how disruptive migraines were for her.

My former neuro prescribed Verapamil but with my already low BP, I thought it would not be a good choice for me. Current neuro agrees, so we are trying Topamax. Crossing my fingers. I cannot go through another week like the one I just went through.

Would love to hear other success stories but I know the reality -- there are issues and problems with all of these drugs.

Doxi

Doxi, I pray this works for you and that you get great relief from the migraine monster.

As we all know, the migraines are a chronic problem. 75-80% of the migraine sufferers have them intermittently and the frequency can vary from once in a few months to 8-10/month.
There are 20-25% migraine sufferers who reach a stage of chronic daily headaches where they have more than 15 days of headaches per month. Majority of them have medication rebound headaches. If you take Tylenol (acetaminophen), Advil(ibuprofen), Excedrin, Butalbital, Midrin, Percocet, Vicodin or similar drugs, more than 2 times per week, you are very likely to develop rebound headaches.
You can control your headaches by following the Ten Steps for Migraine control as outlined at migraine factor X website.
Mindful meditation, deep breathing exercises, stress reduction are cornerstone of good migraine management. Stress is one of the major triggers for migraines. Two other biggest triggers are Caffeine and hormonal changes in women.
There is strong evidence for supplements in controlling the migraines. They primarily act as preventive agents. American academy of Neurology published guidelines on the use of preventive agents in migraines in 2012.
Migraine Factor X follows those guidelines and makes it easy for you to have the right amount of premium ingredients in a single capsule. But no supplement alone can help headaches. Following the Ten Steps for migraine management are very important.
Some people benefit from the combination of Migraine Factor X with nortriptyline, amitriptyline or Topamax.

Good luck on the journey to good headache control.

i'm sure most of you have figured out that the post just above this, titled "managing migraines" is trying to sell us some pretty darned worthless supplements.  curiousity got the best of me, so i found the website, and this stuff has NOT, the same as ALL other supplements on the market, been evaluated by the FDA.  therefore, it has very little or no science behind its claims.

it is all the common stuff to try, conveniently located in one expensive pill. ($70 for one month's supply).  magnesium, butterbur, feverfew, etc.  of course, he includes the crap about "rebound headaches".  this has been discussed here ad nauseum.

and sure, i believe in mindfulness and meditation, but with constant migraines can i keep my mind off my head for more than a few seconds?  no.  so what this person suggests are very simplified practices which most of us have already tried with little success.  and NO, stress is not involved in real migraines.  headaches, yes.  what we have are not headaches.  

yep, i'm a huge skeptic.  those of us with this severe pain have to be.  many here have been relieved of multiple thousands of $.  my 45-yr history has included trying all the things in this pill with zero help.  maybe it will help a few people.  go for it, if you have the cash to waste........downer dianne

i'm not on here much anymore, so forgot how to edit. for the new-ish people, what i meant to say was that what we have are not headaches, but a neurological disorder which is very poorly understood by the medical profession.

Good post Dianne. Most of us have tried all of those things but there are likely some folks here that are new to migraine and might consider paying that high price for that supplement It is good that you let them know these things don't work for most of us, perhaps all of us.

doximom wrote:I just came off a 10-day severe migraine.  The last 3 days were a steady level 9 pain with no relief from Relpax or Frova.  Unbelievably painful -- never had one like this before.  My neurologist has finally insisted that I try a preventative, and it's going to be Topamax for now.  Starting with 25mg and going up eventually to 200 mg per day.  Took my first dose last night.  So far so good.

My friend has been on Topamax for years and cannot function without it.  She has no side effects.  She is a 3rd grade teacher so you can imagine how disruptive migraines were for her.  

My former neuro prescribed Verapamil but with my already low BP, I thought it would not be a good choice for me.  Current neuro agrees, so we are trying Topamax.  Crossing my fingers.  I cannot go through another week like the one I just went through.  

Would love to hear other success stories but I know the reality -- there are issues and problems with all of these drugs.

Doxi

Hey Doxi,

I took topamax for 3 yrs and it worked so well, I actually stopped a few times during that period because I was headache-free and thought I didn't need it anymore (I was wrong).

Honestly, side effects weren't that bad, especially compared to the benefits. If you are worried though, ask for Zonegran, it is known as "Topamax-lite".

I did find that my side effects built up over time--and I mean in the 3rd year--and this could have been due to a few things: the fact that I cycled on and off of it a couple times; or that my neuro increased my dose as headaches came back, thus increasing s/e. Also in the 3rd year I also went on a pretty extreme cycling tour which really stressed out my body physically (No M though!), and after some side effects flared up and the headaches came back.

Anyway, the primarily side effect I had was tingling in my hands and feet. I got used to it, and it was really only bothersome what I was sitting still for long periods of time. I did lose a little weight, but nothing extreme. The worst side effect that everyone complains about is cognitive issues. For me, it was word-finding. I would love to say that this returned to baseline after I went off of topamax but I can't know for sure. The most major side effect I had was a lack of sweating, anhidrosis. This is one of those 1% things that they list with thousands of other things on the med label. Well, during the bike trip which I took in the summer, I discovered that I did not sweat nearly enough because of the Topamax, and it was quite dangerous. After the trip was over, I noticed anhidrosis all the time, even when I wasn't exercising, and would have to touch my hands and skin to cold surfaces for relief. the solution was to lower my dose, but that meant more headaches, and so I eventually stopped topamax altogether.

Still, 3 years was a good run. Some people get 5. Although this may seem like I listed a lot of side effects, these are nothing compared to what I experienced on mood meds. Despite the word-finding issues, my thinking was clear and I basically had my life back, headache-free.

Good luck to you, and please keep us updated!

PS: My memory could be fuzzy but 200mg sounds like a lot for migraines! I don't know what your neuro's plan is, but you might want to see how you do on just 100. You will have significantly less side effects at that level and perhaps some good relief. I think I started at 75 mg, and was maybe at 125 at my highest dose. Just a thought!