My experiences with Topiramate (one of the major ingredients in Qnexa)

My husband and I have caught glimpses of some recent news about the debate of Qnexa – which is a combination of Topiramate and Phentermine. I’m sure just the mention of these two drugs will bring all kinds of interesting traffic. But I thought I would post about my experiences with Topiramate specifically – because what happened to me was real and wasn’t some bizarre side effect that doesn’t really happen to most people. I can’t speak for Phentermine, as I have never taken that before.

I’ve taken Topiramate twice before. The first time was a few years ago for the treatment of migraines. I was getting them a few times a month, and my doctor was concerned that my taking “normal” migraine medication like Imitrex several times a month wasn’t a great idea. So we gave Topiramate a try (Also known as Topamax) It did a great job for my headaches. Little did I know, it also did a great job for my waistline. I was, at the time, trying to lose weight. Watching calories, exercising. During that time I was able to get my weight down to an incredible low. A number I hadn’t seen since High School! I thought it was all the exercise I was doing, and my appetite was under amazing control. But I did have some weird side effects. One I noticed was that (aside from the appetite reduction) I couldn’t taste carbonation.¬†All carbonated beverages tasted flat to me and I stopped drinking them. Not really a bad thing – but just kind of weird. It makes you wonder what the heck is going on with the drug that makes you unable to taste carbonation! I wasn’t really aware of the biggest side effect the first time because most of my work was being sent to me by one single client, and I didn’t need to interact with anyone. Everything was done via email and Skype – so speaking wasn’t really an issue.

I stopped taking Topiramate because my doctor said there was a problem with taking it when you also use Mirena – it reduces its effectiveness. (DOH!!!) After I stopped taking it – all the weight slowly crept back on. My appetite kicked back into full swing. I had originally lost 30lbs – and before I knew it – all 30lbs came back on.

I started to take it again almost a year ago. A new doctor I was seeing didn’t think the Topiramate and Mirena together was a problem (at least initially). The side-effects came on instantly. And this time, they caused some serious problems for me. My work had shifted and I was doing a lot more client interaction. I was on the phone with clients discussing projects, explaining to them what my skills were and how I could help them, etc. But the Topiramate gave me terrible terrible brain fog. I didn’t realize what was happening at first. I thought I was going crazy. I was on the phone with a client, and I couldn’t for the life of me, gather my thoughts to explain what I did EVERY DAY. Words, ALL WORDS, were totally elusive. When I started doing some research online, I found some forums where people talked about experiencing “brain fog” while on Topirmate, and then it hit me that’s exactly what I was going through. That was it. I tossed the pills in the trash! My livelihood depended on my ability to interact with clients, and if I sounded like a moron – then my business was going to suffer.

Shortly after, my doctor contacted me and told me to stop taking Topiramate because she finally did confirm that it did reduce the effectiveness of Mirena. So that sealed the deal.

I’m sure under certain circumstances this new drug Qnexa will be the wonder-weight-loss drug some people have been waiting for. Given that the weight started coming back almost immediately after I stopped taking it (And the drug isn’t intended to be a permanent course of action) I question if it will really make a difference long term for people. I see it as kind of a temporary fix. In the same league as Jenny Craig. Once every meal isn’t specifically planned out for you, or in the case of this drug, once your appetite comes back to normal – that’s when you realize, despite all the weight your already lost – keeping it off will be probably be just as hard as it was losing in the first place. (In fact, it will probably be harder!)

I’m back to trying to lose that weight again and it’s going along, but a lot slower and more difficult than last time. I’m hoping this time once I get down to where I want to be, that I’ll be able to maintain it better than I did last time. I’m still also hoping that one day they’ll figure out a more permanent “fix” (or help) for weight troubles. (and don’t give me a story about how you just need to eat less twinkies. I’m eating very healthy and exercise for an hour 4x a week. I’m certainly living a healthy lifestyle – but the food that is made the most accessible to us is more often than not, unhealthy – and for someone like me – the “daily calorie allowance” is so low it’s practically a joke. It’s VERY DIFFICULT to stay in that calorie range and not feel hungry.)

5 Comments

  1. Jenn
    Mar 7, 2012

    Topimax is seriously harsh stuff! My daughter has all the makings of seizures except we weren’t sure if they were firing off or not. Plus she has migraines. The neurologist wanted her to go on Topimax and said she would have to come in often for tests to make sure her organs were still working correctly! I did some research and decided it was not for us. I consulted her pediatrician who agreed that is a powerful med. As you said, the two advantages and probably only two were weight loss and no more migraines. The negative side effects seriously outweighted the benefits! Glad you are off of it. Sure hope they can find the perfect med for you with the least amount of side effects!

  2. Rhonda
    May 18, 2013

    Jennifer, thank you for sharing your experience. I picked up my Rx last night and sat down and read the PI. It was alarming and my husband and I both decided it would be best to refrain from taking it and seek another Rx from my doctor. This morning I rose with some optimism and thought perhaps I won’t experience many side effects. I found your testimonial, read it and am now thinking it best to not give Topiramate a test. As with you, I cannot risk even a brief episode of brain fog.

    As for your weight issue . . . I want to share that I recently joined Weight Watchers (WW). While I have not lost any serious weight yet – I have learned an INCREDIBLE amount of information regarding food choices, “power foods”, choosing fruits and veggies when snacking, etc. No calorie counting either and you don’t have to deny yourself those favorite foods. Now, I must say I don’t know if all WW group leaders are as knowledged and dynamic teachers as mine is – but, I sure hope so. Give it a try – go ask if you can sit in on a meeting or two and check “them” out before investing in the monthly fee.

    Thank you again for sharing your experience. Best to you!

  3. Stacy
    May 23, 2013

    Thank you for sharing! I started using topiramate almost 2 years ago. Until now I have never had so many side effects. I loved the extra 15 pounds I lost, but recently I’ve had ” brain fog” also mixing words around. My job is on a phone all day so to have to say things out of order is quite embarrassing. Its been happening alot more lately . Also I have high anxiety and mood swings.
    When I first got put on the pill for migraines I was

    getting 3-4 migraines a week. I went to see a neurologist and she
    gave me imitrex shots and topiramate . The first two weeks on the pill I was so tired I could barely stay awake long after I took it and most mornings and days were groggy, but slowly that went away and I became less tired. Then came the tingling in my hands and feet and it was annoying more than anything soon that went away. I also experienced the no taste of carbonation in drinks, I could drink anything witout it tasting flat.
    Eventually those symptoms went away and I could start tasting drinks again. Either its worked for the migraines or just quitting my birth control was the solution. I have t had any migraines since quitting the birth control and have been off that for a year and a half now. Yesterday I decided to quit taking topiramate .
    I went to a internal medicine doctor yesterday with many symptoms such as burning back and neck pain, lumps in back of aways feeling tired, cold hands and feet, insomnia, anxiety , recurrent upper respiratory infections. Seems like everything going wrong doc is running tests &took me off the topiramte, since not having migraines and adding other medicines like muscle relaxers, and lexapro to help with my anxiety. They say my back and neck pain cluld just be from having scoliosis and tension. I have had back pain just not this burning kind and also my bones have been cracking more than normal.I also was recently old I have low vitamin d levels which can cause some of these symptoms too. But I just think that it is worth the try to get off topiramate and see if I feel better, especially since the brain fog has been coming in. Thank you for letting everyone share and comment. Sometimes its best to hear real life stories of what different drugs can really do to you! Good luck :)

  4. Robbin
    Sep 30, 2013

    Hi Jennifer – I started having migraines about 6 months ago. My GP gave me Imitrex, but having heart problems learned quickly that was not the solution. I ended up in the ER one evening with a severe attack and was told to see a neurologist. That led me to topiramate. As I sit here writing this I am a step up program in week 3 of it. I met with the neurologist this morning to tell him I have become a complete idiot on this stuff. I can’t form a sentence. I lose words easily. My speech becomes delayed. My head is in the clouds “fog brain” to say the least. I work in the medical field in a very professional atmosphere and I’m walking around as though I’ve had a few too many too drink. I am completely mortified at how I function on this drug and cannot believe they do not warn of people of the side affects especially when they can be so severe. The only positive I have to agree with you is the total lack of appetitie. I also didn’t have the carbonate taste. I was hoping to drop that extra 25 lbs I needed to shed. Not fast enough apparently. I was only taking 25 mg in the am and pm. I cannot caution folks enough about this drug. My neurologist told me to stop effective today and I’m very thankful. I actually had a brief moment where I mentioned suicide to my husband and I am not and have not been depressed at all. As I write this I cannot even believe I thought it, but the neurologist also desecribed it as a severe adverse reaction. The good news – I’m starting divalproex sodium today and can only hope I get my head screwed back on straight! – side affects weight gain (great the last thing I need).

  5. Teresa
    Jul 31, 2014

    I realize that I’m a bit ‘late to the party’ with regards to my commenting on this post. But I felt inclined to add my own Topamax story to the others here. One thing that I noticed in reading most of the other postings is the lack of specifics given in terms of dosage everyone was taking when having some of these really bad side-effects. I have been a migraine sufferer for over 30 years and they are primarily triggered by hormone fluctuations, though can also be triggered by some other things such as weather and stress. Imitrex was prescribed to me when it was first available and to me, it was a Godsend. As I started going through menopause, the frequency of my migraines increased dramatically to the point where my GYN put me on a low dose of Birth Control pills (to level off my hormone fluctuations caused by the onset of menopause). I’ve had my tubes tied for years so no need to use them for that. After about 6 months, even those weren’t enough so my Neurologist put me on Topamax. But he was very clear about the side-effects related to this drug and had me start out on a 25mg/day dose. He said that I could increase that dose up to 200mg/day if needed, but to do it gradually and only if necessary. Initially, I had issues with ‘brain fog’ but that ceased within a few days. I found that just the 25mg/day dose was enough to decrease my migraine frequency to ‘normal’ levels, which for me was about 1-2 a month (versus 1-2/week I was up to). After about a year, I had to increase my dosage of Topamax to 50mg/day to get the same results. Saw a bit of ‘brain fog’ initially but nothing that would inhibit my daily routine (I work for a software company and would not be able to tolerate much of this, if present). Talked to my Neurologist about my results and he said that 50mg/day is a pretty low dosage so he’s not surprised that I’m not that handicapped by it. In the past few months, I have finished going through menopause and my GYN took me off the BC pills and even with that, the migraines have almost stopped completely (FINALLY!!!). I started backing off my Topamax dosage to 25mg/day again (you should NEVER cease taking them abruptly, according to my Neurologist). Since the migraines didn’t return, I have stopped taking Topamax at all. It’s only been one week but I see no sign of migraines, even though our weather recently would normally have triggered one.
    Also, I did see a bit of weight loss (~5 lbs) when I first started taking Topamax but it didn’t continue. Perhaps if I had been on a higher dosage, it might have. A nice side-effect, but not worth the risk of the drug unless it’s required for something else. I’m hoping that by going off, I don’t start gaining that weight (or more) back. Menopause has caused me to already put on some weight, regardless of what I do with eating and exercise.
    In summary – If you have to take Topamax, try to stay on the lowest dose possible. It might be all you need anyway. And it greatly-reduces your side-effects to be on a lower dose. If you are on it and want to stop…do it gradually (apparently, you can even have a seizure if you stop taking it suddenly!). Good luck to everyone.

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