Headaches & other side effects on Topamax?

Medication 💊 Anticonvulsants
1

Hi. I’m new here. Just started Topamax 5 days ago. First two days took 25mg at night. 2nd day I felt horrible! So dizzy - more than my usual. Brain fog. Tingling. Heachache. Metal taste drinking sodas. Tired. So my third evening I reduced my dose and cut my pill in half. The past three nights I’ve taken the 1/2 pill dosage (12.5mg). I still have increased dizziness and have had a headache every day since starting this medication.

I’ve been suffering with MAV for 1 1/2 years now. I get all the symptoms of migraines - dizziness, aura, eye issues, but generally without the headache. I may typically get one headache a month. Any suggestions what I should do? I know this medication can take a while to start working but has anyone else out there had this type of reaction and had it actually improve? I’m feeling worse now than I did before I started taking it. I’m a stay at home mom with two very young children and it’s so very hard to take care of them and drive them around feeling like this.

Thanks so much for any input you can offer - I’m approaching my wits end. : )

2

Hello. Sorry to hear about your troubles with Topamax. I gave Topamax a good go for several months and at a variety of doses. I started at 25mg daily for 2 weeks and did not feel better, so I went up to 50mg for a month, then 75mg for a month, and then finally to 100mg for a month. I only began to feel a bit better at the 75mg and the 100mg dose levels.

However, I had to stop and get off the drug because my side effects did not go away. Topamax changed the way I tasted carbonated drinks and some foods. It is made me experience symptoms associated with depression such as sadness, suicidal ideation, and a lack of ability to concentrate. I felt quite a drop in my IQ while I was on Topamax because it is a “brain drug” as my doctor put it. All these side effects started at my lowest dose of 25mg a day and only worsened as I titrated up.

From what I read online, the side effects of Topamax such as changes in taste, episodes of stupidity and depressed feelings may not go away with time. However, some people who can tolerate the drug suggest that you take the lowest possible dose until all your side effects subside, and then only titrate up accordingly.

Topamax can work for some people. You have to weigh the costs and benefits for you. If the side effects are intolerable (they were for me), then you may want to consider talking to your doctor about changing medications. Good luck.

3

Oh my gosh - you sound like me! Actually, I havent started taking the Topamax yet. My doctor gave me the script, I filled it but it’s sitting in my bathroom untouched because I’m terrified to start it. I too, get the same type of migraines as you - complicated as my doctor calls them. Not much of a headache, maybe one a month or so, but all the other horrible aura and symptoms. I had to take time off work to try and get this all under control. I’ve had migraine since I was 14 and always manageable but for some reason it’s gotten unmanageable since November.

I had a horrible night last night - bad headache, couldnt sleep, I’ve been awake since 1:30 am and it’s 8 am now. I know I will get a migraine this afternoon - always rears its head when I have nights like that.

I relayed my concerns about Topamax to my pharmacist who said it works for some and some it doesnt. If after a week I can’t handle the side effects on 25 mg then to stop taking it and ask my doctor for an alternative. I was on Amitryptaline for 3 weeks in November but it made me depressed and just not myself. I went off it.

I’m interested to hear what others post here because I was going to start my script tonite. Now, I dont know…

4

Hi Tamsha
I don’t know where you’re located… my daughter and I both take topamax in the 15mg SPRINKLE CAP form which is a capsule that can be opened and dosed anyway that you can take it. Sometimes local pharmacies have to order it. It’s so much easier to take this formulation in order to start at a tiny dose - you can start with 7.5mg if you wanted which I sometimes find to be just right on a mildly dizzy day. I began at the 15mg which (according to my neuro) is supposed to be extraordinarily low, however I definitely felt the impact immediately - I’m sensitive to meds like most on this forum. Topamax made me a bit woozy, spacey, and I had to take it at night for awhile. It’s been very effective for me in bringing down the brain activity but I’ve ended up formulating my own individualized migraine/allergy treatment that I think is working for me now. Topamax cannot accomplish everything: it won’t eliminate food allergy reactions completely, it can’t eliminate headaches already in progress, etc. I’ve supplemented with reasonable amounts of Advil, sudafed, zyrtec, etc. to see how to contain my body’s reactions to things. I’m finally having some success that allows me to only take 45-60 mg. of Topamax per day and lately I’ve had many more less dizzy days than before. For me, when I take higher doses of topamax (the bulk taken in the late afternoon/early evening) I’m fuzzed out and done for the day except for tasks at home. I not only get tingling, the drug makes me uncomfortable cold at 60mg. taken during the day, so I’m desperately trying to work with food triggers and sleep to ward off the need to increase the meds more than I have to. Having said all that, it is a work in progress, and I leave open the possibility of changing meds someday.
Blessings and hang in there. I sort of know what you’re going through. It can be hell.
Gail

5

You basically described much of what I, and many people have and some still, experience while on Topamax. I first would say, don’t fret. These symptoms are not uncommon and they often go away. I would note, however, that you seem to be going up a little too fast in dosage. Topamax usually hits people hard for the first two weeks - I personally felt like $#@! - and I only was going up 15 mg a week. I got up to 100 mg but had to go back down to 75 mg due to the cognitive issues I was experiencing. The physical symptoms you describe tend to calm down the longer you use it. It takes a while for your body/mind to get used to the med and then see if it will work for you. There is no way around that. I have used it for over a year now and can say that it has helped me a great deal. The side effects have calmed down and the few that I have are tolerable. So I would recommend the following: titrate slowly up (go up in dosage slowly), understand that side effects vary and will change/get better, the higher the dose often the more likely you will feel better at a certain end point (this varies for people), and finally, don’t freak yourself out over it! :wink:

6

Hey there,

I’m afraid I fall into the failed topomax user camp. Got up to 75mg but I never felt right on it, just permanently agitated/restless leggy/insomniac type symptoms (in addition to the expected tingles, taste changes etc).

I started on 25mg and by about day 3/4 was an over emotional, teary crazy lady, however this had mostly resolved within about seven days so I persevered with it and kept upping the dose.

Ultimately I decided the insomnia it was causing was’nt going to settle and decided to come off it. I’ve since spoken to a different doc who was talking about topomax and how some people got extreme emotional reactions from it early on, or insomnia, and said that he would always advise pts that if they get this then it’s not going to work form them and they should come off it. I wish someone had told me that at the time!

I know it’s always claimed that these drugs take months to work, but I suppose (having persevered with many hideous chemicals for way too long) I’m gettng to be sceptical about that as my experience has been of fairly fast results from the drugs that have turned out to be effective for me v’s a whole host of side effects and nothing positive at all with the drugs that I took in vain for months on end.

I’m sure many would disagree which is what makes this whole area so difficult, but I’d personally say persevere for a little longer, but that if you’re not having a better time with it by about day 14 then it’s maybe not for you.

Best of luck, x

7

hi there,

i just started topamax too a few weeks ago! i started at 1/4 a tablet, then 12.5 then 1/3 then finally 25 mg, each slowly taking a few days in between, I have finally reached 50 mg and will stay here the next week once I feel ready to up but will follow the same format.

i have promised myself that with each drug i try, i will give it a slow and fair shot unless it is absolutely rotten. so far, i am cmpletely tired, cannot concentrate, have very mild tingling and that’s about it. i am absolutely feeling more dizzy but am willing to stick this out. not sure if it’s from this cold/sinus infection i am also fighting. i just feel drowsy all the time.

i wish the “weight loss” part would kick in!

i remember someone here said that month 4 was when it finally miraculously it kicked in for them. i would like to stay on until then as well to give it a fair shot! i would hate to quit on something that could save my life!

8

Topamax is definitely one of the meds that you not only have to stay on for a while to see if you can tolerate, but also see if it helps your condition. This takes about 3 months many doctors say. It usually takes at least 1-2 months to even get up to the dosage that will help you, so you have to wait it out, unlike other meds where you can quit earlier. It took me about 4 months to know if I could stay on it or not (i can).

9

Hey Bonnie – have you got it all well controlled now? What level would you say you’re at? Sounds like you’ve come a long way since we first chatted about 2 years ago. Very cool. :smiley:

10

— Begin quote from “scott”

Hey Bonnie – have you got it all well controlled now? What level would you say you’re at? Sounds like you’ve come a long way since we first chatted about 2 years ago. Very cool. :smiley:

— End quote

Hi Scott! Long time, buddy. To answer your question, there is not a simple answer, but overall, I would say that yes, I do feel a great deal better than I did when all this stuff hit me 2 years ago or so. You’ll recall I started only on Klonopin which was ok for a while, but then wasn’t enough. We then added Tofranil (which I later stopped because I didn’t like the side effects) and I saw a second Neurologist (recommended by my first who really specializes in balance) and the second is my migraine doc. She suggested Topamax and from trialing that, I was able to find a dose that I could tolerate. I have been on 75 mg of that and the low dose of Klonopin ever since and have found it to be a good combination. Does it solve the problem completely? Of course not. And as you know, it doesn’t get rid of the secondary stuff that many of us deal with (the continuous bright/snowy vision, hightened sensitivity to other things, anxiety, tinnitus, food issues, blah blah - but I will note the Klonopin does help with some of that hypersensitivity, particularly that weird internal buzzing feeling I had - like my central nervous system was going a bit nuts). In terms of migraines, I haven’t had the attacks like I used to (full blown headaches with aura), but I still have the sensations of one coming on occasionally. It doesn’t manifest itself though. As for balance, I believe, because mine wasn’t as bad as others here to begin with, that the Klonopin really was my savior with that, with the Topamax as a second line of help. I do have some off-balance moments and rocking, but not like it was when it all hit. I have not, however, tried to travel on a plane or long distance in a car yet. As for diet, I made some changes, but really can indulge within limits. You know certain things you have to be careful with or they will cause some reaction i.e.: too much alcohol.

So overall, yes, I feel much better than I did 2 years ago. The meds help a great deal. Only caveat is there are side effects. I can tolerate them, but I do notice them, and found that the Topamax has affected me a little mentally - more anger/depression which I don’t like and also short term memory. But what can you do?

Must run for now, but wanted to respond. Hope all is well with you. Drop me an email some time. Would love to hear from you! Cheers, Bonnie

11

Just wanted to mention that a doctor friend of mine suggested that even though my neurologist said I could start at 25 mg of Dopamax (I like that name better than Topamax!) and increase by 25 mg in a week, that waiting 2 weeks might be better. I chose to follow that advice - I decided I wasn’t in a rush with such a powerful drug - so my titration schedule was to increase by 25 mg every 2 wks.