Topamax Roller Coaster - help I want to get off!

For several weeks now I seem to be on a “roller coaster” of mood swings and have recently realised they are typical symptoms of depression and depression is definitely a side-effect of Topamax. So now what do I do? I am already taking Dothep, an anti-depressant which has stopped the migraine headaches so presumably I can’t take a SSRI. I have only JUST got my balance back and some visual vertigo under control after six months of slowly getting up to 100mg of Topamax.
My ever patient and supportive husband is getting just a “bit” ticked off when I get stressed out/panic over minor things.
It’s crazy - having gone through nearly three years of hell and not behaved like this I can’t believe what I’m feeling. Has anyone else had these reactions to a med?
If Topamax causes depression does it reduce serotonin levels? Can a blood test check this out? Ativan helps but can’t take it too often.

Hi barb,

Can totally sympathise with what your going through on the topamax. I couldn’t get past 25mg and experienced all of those symptoms… the depression being the hardest to take. I just couldn’t pick myself up no matter what I tried.

Are you getting more relief from 75mg as opposed to 100mg ? Is it wort considering dropping back down to 75mg or even 87.5 to see if you still have symptom control but lose the side affects.

You’ve done so well to get this far on it, it would be a shame to change now. Perhaps now you have a lot of the symptoms under control you may not need such a high dose to maintain. I think I read on a recent presentation (Dr Silver I think) that mood changes/sedation should be avoided when medicating.

What percentage symptom control would you say you have at the mo ?

Good luck with your decision - you really need a crystal ball with this illness sometimes.


1 Like

Barb, what a shame. How annoying this should happen when you have spent so long adjusting to Topamax!

Dr Silver does say in his letter to patients that side effects of mood changes or memory changes mean that the med should be stopped. I know it’s down to you as an individual though to decide how to interpret this depending on how much it is affecting you. Like Dean says is there any way of coming down a bit on the dose?

I did a post a few weeks ago about how I believe meds often deplete vitamins in the body. That has been my experience of them anyway as far as I can tell. So I definitely think it could be possible that Topamax could be depleting other chemicals, vitamins, minerals etc in the body maybe resulting in the mood changes. The trouble is figuring out which ones. That is always the problem isn’t it, identifying EXACTLY what is going on in there. It probably isn’t as simple as it’s just depleting serotonin. I wonder if you take any other supplements/vitamins? Might be an idea to try some if you don’t. (Obviously check there are no drug interactions first).

Hope you find some answers x

Thanks for replying - unfortunately I didn’t see any worthwhile benefits until I got to 100mg so don’t see any point in dropping back. I’ve only been on the 100mg for five weeks so feel it’s a bit early to consider reducing. I have been feeling the lowered mood for a while but was hoping it wasn’t caused by Topamax and if my balance/visual vertigo improved my mood would too but unfortunately it seems to be getting worse.

Jem - I take lots of vitamins - B12, B6, B2, Magnesium, CoQ10, Folate, Vit E, Zinc . Am thinking of upping the B12 & B6 to see if that helps but think I’m ‘grasping at straws’!

I’m hoping to hear from someone who has been taking Topamax and found that the initial side-effect of depression gradually reduced - like some of the other side effects do!!
Barb :roll:

Topamax doesn’t touch serotonin. There are no blood tests for serotonin that I know of, and the serotonin - depression model is a bit simplistic anyway. A lot of various things can cause depression beyond that, and even then we are really still at a “best guess” stage with how the brain works anyway :wink: Pretty much any anticonvulsant and any antidepressant can cause mood disturbances, despite different mechanisms of action, and it really all just comes down to individual body chemistry.

I have had meds that cause mood disturbances wane in their effect on me over time, and I have had others which did not. It’s up to you and your doctor whether or not to try keeping on and see if it goes away. Personally, if I was suicidal I would be off in a heartbeat but otherwise I like to try and stick things out for a few months - I know this isn’t appropriate for everyone though.

How much of the Dothep are you on? Is going up in dose an option?

you can take an ssri with a tricyclic- but I think the dosing might be affected. Right now i am actually taking 150 mg of nortriptyline and 50 mg of zoloft- I am getting off the zoloft bc it is making me worse- but if I were to go higher I might have had to drop the nori dose some- but it is possible- I would try to add something like that OR somethign else like abilify or seroquel- these are meant to go with antidepressants- do not get off the topamax- it sounds like it has really helped you- I would do anything you can to stay on it.

What % is your balance at now and how was it before the topamax?

So sorry to hear of your issues with mood disturbance. I didn’t have those issues with topamax. I TOTALLY had the tired and the dopey and the word loss–and all those have waned dramatically–though I still am tired more than I used to be. I’ve been on 100mg for nearly 5 months now and I have to say that life has gotten substantially better week by week. I would have NEVER thought that a year ago. EVER.

There are all the dumb, obvious things to say now–do you take your doses at the same time every day? Do you take them spread over the morning and evening so as not to have dramatic drops in blood dosages from morning to night? (50 mg a.m. 50 mg p.m.) Are you getting at least 8 hours of regular sleep nightly? yadda yadda yadda?

Sorry I can’t offer more concrete info or advice–fingers crossed that it evens out for you though. :frowning:

Wow, thanks for all your help guys - this forum really is a lifesaver! From feeling totally ‘down’ and thinking I had no options after reading your posts and thinking a bit more clearly I can see from your suggestions that there are changes that can be made.
First, after all the effort it has taken to get onto the Topamax I’m not going to give up without a fight!! I do need to stay at 100mg to maintain my balance which was pretty bad (like falling over!) but will look at changing other meds.
Dizzy - Upping the Dothep is an option - I was taking 125mg at one time but didn’t like the side effects but maybe I need the extra to fight off the ‘downs’ of the Topa!
Sarah - didn’t know zoloft is OK to take with a tricyclic so will discuss that & the other two options with my doctor.
Dolf I do split the Topa doses evenly (50mg am, 50mg pm) and get regular 8hrs sleep. Your success on Topamax has been one that has encouraged me to keep going and it’s good to hear that the ‘dopiness & word loss’ have waned dramatically and that life has got so much better for you. Gives me all the more reason to keep looking for ways to get through this.
Will talk to my GP re adding/changing meds and also see a psychologist - :roll:

the psychiatrist will have more ideas of what to add- meds like ability and seroquel wouldn’t be prescribed by a neurologist- don’t give up Barb there are (fortunately) many other med options for your mood.

Hi Barb,
Sorry to hear you are struggling on the topamax. I do remember when I started on the Topamax I didn’t get depressed, but I did feel a lot of anger and my fuse was ridiculously short. In fact, sometimes I worried I would fall into an uncontrollable rage (luckily this didn’t happen).
I can’t remember how long it took, but this side effect went away after a while and my temper went back to normal. I was glad because the benefits the topamax gave me were good.
I am off the topamax now (have been for a couple of weeks), and I can now tell what a good job it was doing for me. A few of the old symptoms have come back, and I’m also not sleeping very well. I think the topamax helped me to sleep well and I miss that now. I keep telling my husband that I miss my tablets.
Have you contacted Dr Granot to get his take on what you’re experiencing?
Good luck!
Kind regards,

Hi Helen
Wow, was surprised to read you are now off the Topamax! Can I ask what the reason was? Yes, I think it does help me sleep well. Did it take long to reduce the dose - I have wondered whether it takes as long to come off as it does to get on!!
I haven’t contacted Dr Granot yet because I feel I need to talk to my GP first - I’m still puzzled about this depression and wondering whether it is in fact MARD as anxiety has been a big problem for me since day one and I’m trying to analyse when I feel worse. It seems to be when things get “on top of me” and I feel I can’t cope with everything I need to do. I get over anxious and angry & then get depressed.
It all seems like a “whirlpool” of emotions that need an impartial expert to sort out. Just need to find that person!

Hi Barb,
I came off the Topamax because my husband I are thinking about baby No 2. Dr Waterston and my obstetrician both said I should stop the Topamax before trying for the baby as it’s been known to cause birth defects. Under the doc’s guidance I stopped over 1 week. Yes, you read that right, just 1 week. Luckily, although I have felt a few symptoms return, I didn’t have fallout from stopping the medication. I think it may be because the Topamax had helped me feel significantly better and perhaps my brain was in quite a stable state. Maybe!
Good luck working out what’s going on. I think that with this condition it’s normal to feel upset/anxious/angry to a certain degree as it’s just so awful. And if I remember correctly Dr Silver’s presentations have stated that migraine can cause mood disturbances. Untangling the web of what’s going on is so difficult. I hope you find that person who can help you work it out.
Kind regards,

I think you’re wise to be thinking ahead re baby no 2 - did Dr Waterston or the Obstretrician say how long it takes to clear the system of the drug to be safe for the development of the foetus? How did you manage through your last pregnancy - were you still able to take Dothep? Best wishes for all your plans.
Yes, I did have to read it twice- that you came off 100mg Topamax in one week with no fallout!! Amazing! I have been on 100mg Dothep for well over a year with minimal headaches so I will look at reducing it and adding an anti-anxiety med.

Hi Barb,

Well done on getting to 100mg. Sorry to hear about the depression. I have to say I have avoided that but I think that has a lot to do with me being on 10mg Lexapro - evening dose. (I started on 5mg and slowly increased). I also saw a psychologist one who’s expertise was in people with MAV, Meniere’s, General dizziness, Anxiety etc… I got a lot out of this - they really helped me come to terms with a) my condition, and b) how to deal with it day to day. I wish you all the best with it Barb - Power ON!!! :wink:

Hi Clarityseeker,
Glad to hear the psychologist was helpful for you. Who did you see?