Long-term use of Topiramate and depression/low energy

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Ravensong

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I've been on Topiramate/Topamax for several years at doses ranging from 400mg (currently - recently decreased from 500mg) to 700mg. It's been very good at controlling my partial seizures until I started having some olfactory hallucinations within the last several months which are now being controlled with gabapentin.

I also have a serious problem with depression and no energy, as well as being tired a lot of the time. I see a therapist regularly and work on issues that I know are contributing to the depression, and I've had numerous medical work-ups for the low energy and fatigue, but we don't think that, given all I've done, I've made as much progress as I should have (I actually haven't made any). I've also tried several antidepressants.

I'm wondering now if the topiramate could be contributing to how I've been feeling. Anybody have a similar experience?
 
I've been on Topamax since 2010, and while I haven't had issues with depression, I would say that it's made me incredibly lethargic and exhausted. But I thought most AEDs cause exhaustion?
 
Garbo said:
I've been on Topamax since 2010, and while I haven't had issues with depression, I would say that it's made me incredibly lethargic and exhausted. But I thought most AEDs cause exhaustion?
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I had never been told (and never thought) this was a continuous, long-term effect. I thought it was something that you got in the beginning of treatment and it eventually went away.

I started gabapentin in April - for nerve pain, but it also stopped some new partial seizures I was having - and it made me crazy drowsy when I first started it. Eventually, that drowsiness went away, though. I thought the lethargy and exhaustion was the same way.

Reason I bring this up is that everybody has been telling me that my tiredness and exhaustion are my depression. Even when I tried to talk to talk to my neuro about the Topamax, he said "Well, yeah...I guess it might be contributing, but..." I've been working sooo hard to overcome this depression and it just doesn't get better. My energy is so low and has been for years. Doctors tell me I'm not doing enough to help myself, but I've done everything you can imagine and it's just not helping. Even my current therapist says I've worked harder than anybody he's known.

Sorry. I'm just really frustrated.
 
It can be really tough to untangle the threads -- depression, epilepsy, meds -- and figure out the source(s) of your fatigue. If you get better seizure control with the gabapentin, maybe you can ask about easing off of the topamax a bit?
 
I have been taking Topamax almost since it entered the market--at least 17 years ago. For me, it was an add-on. I was already taking Dilantin due to simple partials--this was added when complex partials started. I didn't experience any depression, & tiredness (or sleepiness) didn't occur, either.
 
Sabbo said:
I have been taking Topamax almost since it entered the market--at least 17 years ago. For me, it was an add-on. I was already taking Dilantin due to simple partials--this was added when complex partials started. I didn't experience any depression, & tiredness (or sleepiness) didn't occur, either.
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What is your dosage?
 
I take 400mg/day. I also take Vimpat 400mg/day. Unfortunately, I still get breakthrough Complex Partial seizures. I have been on nearly every AED available. They will to control my seizures for a short time, after which my brain seems to becomes partially "immune" to them.

I began on Tegretol back in 1987--when I had 3 or 4 Tonic Clonics--I had a severe allergic reaction to it. (I had been having simple partials since childhood but they weren't diagnosed until after the tonic clonics). My journey as a lab rat began from there. About 17 years ago, Complex Partials began, & so did the AED fun. Trying all types of combos w/Topamax.
 
Sabbo said:
I take 400mg/day. I also take Vimpat 400mg/day. Unfortunately, I still get breakthrough Complex Partial seizures. I have been on nearly every AED available. They will to control my seizures for a short time, after which my brain seems to becomes partially "immune" to them.

I began on Tegretol back in 1987--when I had 3 or 4 Tonic Clonics--I had a severe allergic reaction to it. (I had been having simple partials since childhood but they weren't diagnosed until after the tonic clonics). My journey as a lab rat began from there. About 17 years ago, Complex Partials began, & so did the AED fun. Trying all types of combos w/Topamax.
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Sorry to hear of your struggle. It sounds similar to mine. I was having simple partials (and likely complex) in childhood as well, but nothing was diagnosed until after I had a massive tonic clonic in the early 80s and nearly died. They started full force again then and when I was almost hit by a train one day, someone decided maybe they should work me up.

I also was on Tegretol, among many others, but Topamax is what I finally ended up on. It works, but the psychological stuff is so bad I want to die most of the time, so if it's contributing, it's really not worth it.

Thank you!
 
So...neuro's office called today and the plan - if I agree - is to switch to Lamotrigine. He has a very lengthy add on and tapering off plan, which I appreciate, but I was on this before (depression) and had issues with it (although it was a very long time ago and don't remember what they were).

After a long time of not really having to deal with seizure issues, the re-emergence of partial seizures and the beginning of the medication dance is really discouraging.

I do not want to start down this path again.
 
I understand what you mean about the AED dance. My neurologist tried to add Lamictil as a third AED, it must be related to Tegretol, since it caused an itchy rash to start on my upper back just like Tegretol did back in 1987. Had to stop it immediately.
 
With Lamotrigine especially, there's a benefit to the "low and slow" ramp-up process in terms of minimizing the side effects. Hopefully it will help for your partials Ravensong!
 
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