Contributing factors to depression - anybody take topamax?

[whiteraven]

I have been taking Topamax for partial seizures for several years at a pretty high dosage. A few months ago, I started having some major issues with aphasia - I was having trouble finding my words - and my neurologist said that was the primary side effect for Topamax so he lowered my dose slightly, having me taper off of it over a month. It's still a problem, but maybe a little better.

I've been talking to people on the epilepsy forum and doing a lot of research on Topamax and have discovered that it also has side effects that include low energy, fatigue, and depression. I sent an email to my doctor and asked him if it could be contributing to all the issues I've been having - have been having for several years - and his response was that, yes it could, but since it's not the sole cause, I really need to see a therapist, take meds, see a psychiatrist, and exercise and if I wasn't doing all of those simultaneously, then I wasn't fully attacking my depression.

OMG. This was about 3 weeks after I saw him - he has in his records exactly what I'm doing. And although I'm not doing all of these at the moment, I've been working so hard to feel better for sooo long. It makes me crazy to think that I've been on a medication that may have been contributing to my all-the-time fatigue and low energy and depression. Even if not being on it would help a little, I don't want to take it anymore. This depression has ruled my life for years. He knows this. My neurologist and other doctors before knew this and nobody ever said anything about the Topamax. I'm reading patient after patient talk about how they've had to stop taking this at doses of 25 and 50mg. I have been on 700mg. I'm now down to 400mg, but was on 500mg for many years.

Anybody have any experience with this med?

 

[Deleted member 541]

I was put on it once for migraines. After a week on it, I pulled myself off of it. Dizziness so bad that I could hardly function. I read up on it and yes, it’s a nasty drug! But, aren’t they all?!?!?!?

Is there another drug that you could switch too??? I’m on Tegrotol for a pinched nerve, but it’s also a seizure drug too, an old one, but still available. I’ve had very few side effects and I’m on 400mgs a day. Mostly dry mouth.

 

[Fiadh]

Hey yes I've been on topamax for quite a while with no too many issues at 200mg a day, but then when I try to increase I get side effects badly- I was exhausted, I think my paranoia was worse and I was more irritable than normal. The neurologist has suggested the dose go back down, and I've seen improvement since. Bloody side effects!

 

[NaeNae75]

I couldn't take it...I was becoming almost violent because of the confusion the side effects were causing.

 

[DharmaGirl]

Everyone reacts differently to medications. Many people may not get that side effect or any of them. It doesn't make the med bad, it makes it bad for you and the people who have the side effects.

 

[NaeNae75]

Everyone reacts differently to medications. Many people may not get that side effect or any of them....

Perfect point!

 

[whiteraven]

I was put on it once for migraines. After a week on it, I pulled myself off of it. Dizziness so bad tha...

Well, no they all aren't. Some are worse than others and not everyone responds the same way to each.

I was on Tegretol. For quite awhile. Ended up having problems with it, although I'm not sure if it was the drug or how I was taking it. I know I can likely switch to something - there are a few newer ones with a lot fewer side effects - but I can't get my neurologist to understand that I'm at the end of my rope with the depression. I'm working on having other providers call him, but that's a really, really hard thing for me.

 

[whiteraven]

Everyone reacts differently to medications. Many people may not get that side effect or any of them....

Not sure who you are responding to here? But...I wasn't suggesting this is a bad medication. In fact, it has stopped my partial seizures completely. I know a few people who also take it for migraine and it has helped them when nothing else would. But I also know that it's one of those drugs that has a very high incidence of very negative side effects, some lethal. In the epilepsy communities that I frequent, it has a pretty bad reputation. That's all I was saying.

 

[joeylittle]

I've been talking to people on the epilepsy forum and doing a lot of research on Topamax and have discovered that it also has side effects that include low energy, fatigue, and depression.

Yes, it does. The nickname I learned for it was dope-a-max, as in, it makes you dopey, slow, etc.

his response was that, yes it could, but since it's not the sole cause, I really need to see a therapist, take meds, see a psychiatrist, and exercise and if I wasn't doing all of those simultaneously, then I wasn't fully attacking my depression.

Well - he does have a point. But I understand completely why you'd be frustrated.

In fact, it has stopped my partial seizures completely.

Are you/your physician looking at changing to a different med for the epilepsy? if you want to stay with the topomax and are just trying to find your minimum therapeutic dose, talk with your doc about drug options that can counter the topomax without increasing seizure risk (I think there are a few, not many) - and try getting really regular with some self-care things that are known to increase energy (exercise especially). It will be harder to do, if the drug is bringing you down, but if you can get over the hurdle of starting, then it may help a great deal.

 

[whiteraven]

@joeylittle Except that I've been working on "attacking my depression" for years. I'm actually a little offended at his - and other folks' (there have been many) - assumption that I haven't been doing enough. There were times when I was doing all 4 of those things - simultaneously - and they made NO difference. The thing is, and the reason I brought it to him in the first place, I believe that there are other factors that may be making it hard to overcome the depression. I worked VERY hard for a very long time until fairly recently to try to make changes in the way I feel short of what I consider invasive techniques like ECT, and nothing has helped on anything but a very short-term basis.

I can't even get past the "you're not doing enough" discussion with my neurologist. The last neurologist had me fill out forms about my depression every time I visited. Never once looked at them or talked to me about them.

I have tried exercise. First of all, it doesn't help. I know that goes against what everybody believes, but it just doesn't. I went to a gym 3 days a week for 5 months and I did NOT feel better. I used to love to walk. I have tried that. I can't anymore, because I have pain. Intense back and hip pain. Short distances for short periods of time don't help. I've tried. It's drudgery. It takes a lot of energy that I don't have. I'm not trying to be difficult - I'd love to be able to go take a walk out in nature or go hike like I used to. I don't know how to make it work.

 

[joeylittle]

I’m sorry to have assumed, @whiteraven.

Are you/doc looking at other seizure meds, to see if you can get off of topimax? Or, anything you could take as an adjunct?

 

[Cannottakethis]

I’ve been on topamax for over 10 years. It has been a life changer for me for migraine prevention. The initial side effects are gnarly. Tired, things taste bad, weight loss (a plus for me) aphasia, confusion. I learned to up my dosage on Friday evening so I’d have the weekend to get through the side effects. Once I was on the proper dosage I was fine and I don’t have anymore. It really depends on the person and their tolerance. I take 400 mg daily.
It’s supposed to help with mood stabilization, but idk about depression itself. In my experience it’s considered an add on to other meds. I hope @whiteraven that you can find something to help your depression.