Topamax - When is it time to stop?

[hmay42]

Hi.  I've been on Topamax since July of 2008, and in twelve months time I lost approximately 40-45lbs.  Now it's a little more (I was about 144 when I went on it, and at my lowest last Thursday I was 98lbs; usually I'm between 101 and 104).  My neurologist sent me to a gastroenterologist because he felt that this weight loss was troubling.  Now these GI doctors are going bananas over this, putting me through diagnostic test after diagnostic test.  I have had ultrasounds, small bowel series, xrays, an EGD, a colonoscopy, stool studies, and vials upon vials of blood taken.  EVERYTHING has come back normal (save for a some cyst issues on my ovaries).  They're putting me through all of these things because of this weight loss, but I was under the impression that this was not unusal for Topamax.  I've read that one of its off-shelf uses is a weight loss drug.  So why is everyone so concerned about the numbers (my weight)?  Is it time to try another treatment?  

[marileew]

Hi hmay42,

Well, the reason why it is troubling your doctors is probably because 98lbs is not typically a healthy weight for your height... you see, if we weigh under a certain weight, our bodies may stop functioning properly. So, although you are right, one of the side-effects of Topamax can be weight loss, and it is used off-label as a weight loss medication, if 98lbs is under a healthy weight for your age and height category, then it may not be an appropriate medication for you.

Mind you, if the Topamax is working wonders for your migraine/headache pain... it might also be a shame to take you off of it... which is why your doctors are searching for an alternate cause for your weight loss. Basically, they probably want to make sure the weight loss is not caused by anything else before taking you off of a medication that has taken your pain away... because by taking you off the medication, your pain will probably return, and your doctors don't want that.

If it is the medication that is causing your weight loss, there are other options. Another anticonvulsant might be appropriate as I am assuming the Topamax worked for you since they haven't immediately taken you off of it once you started showing side effects... so anticonvulsants might be the right match for you, but there might be an anticonvulsant with a side-effect profile that does not include weight loss. If you cannot find another anticonvulsant that is appropriate, there are still the antidepressants that work for migraine pain, headache pain and chronic pain. There are also the Beta Blockers that work for migraine pain. And there is Botox Injections that work for migraine pain and some types of other headache pain. So... you do still have other options.

As for if it is time to try another treatment, well, according to the info you gave here and the weight tracker on your page, your BMI is appears to be underweight at the moment. According to both the World Health Organization and my own government's health guidelines, anything under a BMI of 18.5 is considered underweight. Now, although being underweight can put you at risk of increased health problems, according to my government "a BMI somewhat less than 18.5 is not necessarily an indication of health problems." So, I think it is really up to your doctor and you to decide when your weight is putting you at risk for increased health problems and when it might be time to try a medication that does not have weight loss as a side-effect.

Hope that helps! Good luck. Let us know how it goes!

[tuxedocat]

I also had this kind of crazy weight loss on Topamax. For me, it turned out to be the combination of the dosage of Topamax and other medications that made the weight loss so severe. I noticed that once I stopped taking Wellbutrin and as my headaches improved I lowered my dose of Topamax, the weight loss eased off and it took about 6 months to get back to my usual weight. Now I am back watching what I eat, instead of eating everything in site and losing weight!  Of course, this is one experience and I don't know what your specific situation is.
Perhaps you can get by on a lower dose of topamax? I find that I can't take more than 50mg and do best at 25 mg, but I have to be very careful about triggers/lifestyle and do sometimes need to increase it for a few weeks at a time.
Good luck to you! I know Topamax is a struggle. It is a curse and blessing. it works so well but has such horrible side effects.