Topamax Exceeds Placebo as CDH Preventive

A 16-week clinical trial of 59 people who have CDH from transformed migraine (not chronic tension-type headaches) found that about 29% experienced at least 50% headache relief while taking Topamax. On average, participants in this group had 3.5 fewer bad days a month. Those who received a placebo had a 0.2 day increase in headache days. The amount of headache relief was determined by headahce and quality of life questionnaires, including MIDAS and HIT.

It often takes three months for a patient to determined if a particular drug is an effective preventive for them. Because Topamax has to be started at a small dose and slowly increased to a higher dose, it takes about a month to reach the full dose. In this study, researchers only included the level of patient response in their last four weeks of treatment.

The side effect data gathered from the trial is initially shocking. Of those who took Topamax, 75% had side effects. But, 52% people on the placebo also had side effects. The researchers concluded that there was no statistically significant difference between the two groups in the incidence of side effects.

Speaking of side effects, if you visit a headache forum, you’ll see a large number of posts on the evils of Topamax. Dubbed Dopamax by patients and medical practitioners alike, the mental fogginess, trouble concentration and a bad memory are the frequently side effects. Waiting out the initial three months of taking the drug leads to a decrease in the severity and/or amount of side effects.

As with the aspirin study results, this study was presented at the European Headache Federation‘s annual meeting.

10 Responses to Topamax Exceeds Placebo as CDH Preventive

  1. Pam says:

    I have been on Topamax for over a year. I now have more headache free days – to me it’s worth the fogginess and word retrieval problems. I really enjoy not having daily migraines. It’s a relief. It was hard at first…I’m actually at the point where my neuro needs to up the dosage.

  2. katy says:

    The thing about the side-effects doesn’t shock me at all. I’ve been on Topamax 3 times now. The first 2 times the cognitive side-effects were extreme. They were so bad the second time that I couldn’t stay on it past a few weeks, and the 1st time I was on it I had to go off it because I couldn’t stop losing weight. This 3rd time though, I’m barely having any cognitive side-effects whatsoever. It’s very odd! I do get the shakes really bad if I go above 75mg/day though unfortunately. It’s too bad because it does help and I’m sure it would help more if I could take a higher dose.

  3. Kate says:

    I used Topomax several years ago and it took me to a certain degree of improvement, then hit a plateau, beyond which I couldn’t tolerate an increase in dosage due to the cognitive side effects. I had weight loss, but it was just the right amount of weight loss and nothing further.

    Interestingly, after DISCONTINUING it, the progress plateau I had reached stayed there – meaning my pain & functioning levels did NOT return to the pre-Topomax level, as it always did with other med trials that I had to stop. I have read this experience by a few others too. I thought THAT was pretty cool and convenient at least.

    I tried it again a little while ago, strictly for weight loss, but this time I had TERRIBLE mood side effects. Mood side effects are not listed as a likelihood in the literature. I was DRASTICALLY depressed, angry, irritable, and agitated. It was horrible for me and everyone around me. I stuck it out for 3 weeks and then had to stop. It was then that I asked others about it on a migraine discussion forum, and found that MANY had had SIGNIFICANT and prohibitive mood problems on the topomax.

    I would still encourage people to try it, because it works GREAT for alot of people. But it’s good to know that there are more side effects than listed, just so they can recognize it if they experience it. I returned to myself again as soon as I stopped taking it. There were some who wrote me that their mood problems went away after they adjusted to it, but I just couldn’t tolerate waiting any longer.

  4. Angel says:

    Even though I had a bad experience with it, I definitely think it’s worth a try if someone is looking for a treatment.

  5. Kerrie says:

    Thanks for sharing your experiences. They will certainly help people who are weighing the pros and cons of Topamax.


  6. Sue says:

    I have Postural Orthostatic Tachycardia Syndrome and was given Topamax in case migraines played a role in it, but we don’t think I have migraines. After only 4 low doses(25 mg?) I was having loss of appetite, insomnia, nervousness/shaking. I started to doubt all my actions and thoughts and believed many of the things I did were seriously wrong. This affected my normal activities and I was unable to cope with the thoughts and stopped taking Topamax. I have obsessive tendencies, but the Topamax could have caused a drastic worsening.

    Wow, that sounds scary. Thanks for sharing that — some people love Topamax and some people have had terrible experiences with it. It’s good to hear both sides.

    Take care.


  7. Cindy says:

    I have only been on topamax for 3 1/2 weeks now and so far so good but have some tingles in the fingers, feet and sometimes alittle numbness but not bad. But what I dont like is the nausea I get and the dizziness I get. I hope that it gets better in time, as for my migrains go I have’nt had a single one since I started topamax and that makes me very happy!

    I’m glad to hear it’s working for your headaches! For most people, the side effects lessen after taking it for a while — I hope you’re one of them. 🙂


  8. R. says:

    CDH with frequent migraines here. I started out at a very low dose of Topamax, and over two years have gradually increased to 100 mg in the morning and 100 mg in the evening, which I’m told is the highest dose my neuro will do. I’ve seen a dramatic reduction in headaches in frequency and severity, and migraines in frequency. But I still get them quite a bit. Abortives have become significantly less effective — who knows if that is related to topamax or its own thing.

    Side effects have been no picnic. It is difficult for me now to choose if I prefer the side effects or the headache. When I have doubts, I pull out the old headache diaries from pre-topamax days (almost every day filled in) and for now am staying on it. But the hair loss, doped up, fatigued, no appetite, numb hands and feet is not ideal.

    Choices, right?

  9. Jenny says:

    I think this website is great. I have been on Topomax for over a year for migraines and also Abortive medication of Amerge for when I really need to take it. I understand the tingling extremeties I also get numbing in the face and some blurred vision although I am told the bkurred vision is part of the migraine. The cognitive side effects are really bothering me. I feel so stupid and unfocused, especially at my job. I have lost weight, some people think I am sick for those who have not seen me in a while. I always get weighed in at my follow ups and they have not said anything about being abnormally thin….I don’t want to stop because the migraines really incapacitated me but I wonder if there is anything I can do to help the cognitive effects of the Topomax? Also anyone get migraines triggered by allergies?

  10. Randi says:

    I’m so relieved to see this information! I’ve been on topamax for several years now at what I guess is a fairly high dose(400mg/day), because I’m only 110 lbs. I had NO idea that my hair loss, and almost complete inability to focus, concentrate and remember anything was due to this medication until just yesterday!!! I was concerned that I had a medical condition which was causing it. The tingling was bothersome but worth it to say good bye to disabling migraines.
    Now my migraines are only once a quarter, so I will tolerate this awful side effects!!! Better than losing a few days each week or so to the pain.

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