Hey everyone, well I took the Topamax for a week. 12.5 mg for 3 days then upped to 25mg. The doc wanted me on 25mg the whole time till I upped to 50 but I was already getting lots of tingling in my mouth that was causing me to slur my words. I even had tingling for the whole day after stopping. It was strange because it was like my mouth couldn’t form the words correctly, the only thing i can think of is that it was tinglIng causing it. Aside from that I felt more anxious and antsy. He told me to stop Topamax and he just called in Depakote er. He said this generally has less side effects, has anyone had success with this? I can’t tell if the Topamax did anything because I’m also on prednisone and that has helped lessen the dizziness but I’m still pretty lightheaded. From what I’m reading Depakote is in the same class of meds as Topamax so I’m not sure why he went with this but I’m assuming he sees success with these.
Depakote has some significant side effect POTENTIAL, but doesn’t mean you will get them. Otherwise, it is very calming. Even though they are both anticonvulsants, they affect the body differently. Topamax has tendency to make people lose weight where most these meds have propensity to make one gain.
I know two people on Depakote that are loving it. Ut will prob make you tired as well. Good luck!!
Kelley
Thanks Kelly, well I haven’t taken the Depakote yet, the doctor wanted to see if I could stick it out and see if the side effects go away, or don’t get worse. I am taking the Topamax again, 25mg and adding vitamin c to it since I hear that can help with the tingling. I’m still having lots of problems forming words though, it’s so strange! It’s like I slur my words a little… Should this just go away? I’m not increasing to 50 for a while, and if it’s starts to get worse I will juat start the Depakote. Also it seems like the prednisone could have lessened the dizziness. I know steroids can be used to break a migraine cycle. I’ll have to do a search on this site to see if anyone else has taken prednisone.
I haven’t seen anyone break mav with steroids, but this stuff is so unpredictable. I think the word finding speech issues don’t go away. But I would ask ur dr or pharmacist to be sure.
Kelley
My neurologist suggested that I go up 25 mg per week when I started Topamax, but a doctor friend of mine suggested I go slower - 25 mg every 2 weeks - so I took my friend’s advice. No need to rush with this stuff. Except that the dose where it works is usually 100 mg, though some people do get results at 50 or 75. And you really can’t “start the clock” to count the time to when you’ll know if it will work for you (2 or 3 months) until you’ve hit that therapeutic dose.
They don’t call it “Dopamax” for nothing! I have some word-finding problems sometimes, but since I don’t do much public speaking I don’t care. It’s usually words I don’t use that often, though sometimes it’s something more common, and then I feel a bit “dopey.” Can’t say I ever slurred my words though. The tingling has lessened over time. Unfortunately, so has the reduction in my appetite - I lost some weight at the start (needed to) and could stand to lose some more.
Hope some of this info helps. Best of luck!
Hi! I too have stopped the topamax. I took 25 mg daily for 3 weeks with no S/E’s and still had headaches with 24/7 dizziness . After the three weeks I started the 50 mg daily. Was on it for 5 days and turned AGRESSIVE with horrible worrisome thoughts all day. Did not even recognize the agreesive behavior…my family pointed it out as nicely as they could without trying to hurt my feelings or derail my treatment. However when I started having thoughts of death (not mine) all day long I had to stop. This scared me. Took 3 days to feel more like my normal dizzy self.
Now I am at a loss, have tried neurontin (constant fog and forgetfulness), nortriptyline (heart palpations…I have high BP so this was a no also), lexapro (severe stomach cramps and diarrhea).
Well that being said I am starting to feel some relief from head and neck massage, meditation, yoga and next week my husband has asked me to give acupunture a try. I recognize my food triggers now (this took about 2 months). We had to go to Arlington in VA to bury my in laws and this has really thrown me for a loop. I am so tired of being dizzy 24/7.
Also of note: I take metoprol 50 mg daily for my BP, pravastin for high cholesterol and xanax for my panic attacks. The xanax also seems to help slightly with the dizziness and vertigo.
Also taking COQ10, magnesium and the B complex vitamins which includes riboflavin.
My disability is up soon and I am in a constant state of panic about how I will handle my high pressure job. Any advice is welcome. Thank you!
Karen
Thank you for the replies. I took my dose of Topamax tonight and have been so teary for some reason… This is new. I do have a history of anxiety and depression, I know Topamax can cause that in some people. I took zoloft for a couple weeks which was great for my anxiety and depression, noticed a difference almost immediately but about 2 weeks in started getting more dizzy and horrible headaches. I tried to stick it out but it was to the point where I thought I would faint some days. I stopped, I tried celexa for a couple days, it made me have insomnia, and a little more anxiety but I also got stomach cramps and diarrhea which is the main reason I stopped. I couldn’t even go to the store without having to rush to the bathroom, and with 3 kids that’s already hard! All these darn side effects make me wonder if it’s better just to deal with dizziness. I havent figured out any food triggers yet, I cut out caffeine for over a month and saw no real difference so I just started having a cup of coffee a day again and no increase in dizziness either. My periods are always the worse times, I am spinning horribly on my time of the month, almost in a complete fog. I want to try cymbalta especially since I have a history of anxiety but my insurance doesn’t cover it and it is very pricey! I do take very little Ativan everyday which helps, it’s the only thing that does. I take .25mg or less. I’m almost out though and my GP is hesitant to prescribe more. The prednisone I have been taking taking has lessened my dizziness some, I have another 4 days on it. My husband also wants me to try accupuncture, I already had a cranial sacral massage, and while it was relaxIng and maybe helped my heavy headed feeling a little bit, it did nothing for my dizziness. Maybe I need to go more. I take fish oil, magnesium and b complex vitamins, thinking of trying coq-10. I just feel like nothing will help but the right medicine, but I hate to trial so many and experience crap with them all!
Hi! I am sick of trying all these meds with bad side effects and no results. The head and neck massage I have done twice and you are right…it does help the headache but not so much for the dizziness. I will let you know how the acupunture works out but unfortunately it is very expensive (not covered by insurance) and I will have returned to work before I can get an appointment. i am 61 so this is not hormonal. Shopping is a nightmare. My husband is doing most of that now. I only go into the store for the things I absolutlely have to pick out myself and then leave my husband to check out. I even had to put a shower chair in the tub because I could not bend down to shave my legs. Just writing that makes me really feel old!
I am so frustated and just hoping that all the natural alternatives will give me some relief! Along with my xanax of course.
Karen
— Begin quote from “mommyrebecca919”
Thanks Kelly, well I haven’t taken the Depakote yet, the doctor wanted to see if I could stick it out and see if the side effects go away, or don’t get worse. I am taking the Topamax again, 25mg and adding vitamin c to it since I hear that can help with the tingling. I’m still having lots of problems forming words though, it’s so strange! It’s like I slur my words a little… Should this just go away? I’m not increasing to 50 for a while…
…I took my dose of Topamax tonight and have been so teary for some reason… This is new. I do have a history of anxiety and depression, I know Topamax can cause that in some people.
— End quote
Hi rebecca,
I know I’ve mentioned this before, but if you’re back on the Topamax and struggling, please, please, just try and go lower and slower! Why not try at 15mg for a few weeks? Then move to 25mg? Then you can try (2 x 15) 30mg, then (25 + 15) 40mg, etc…? I had terrible anxiety and dpression at when I jumped from 25 to 50mg, and had to return to 25mg. But when I returned to 50mg much later on (via 30, 40, 45mgs) everything was fine! Why struggle too much? Just tritrate more slowly! Just a thought. I wish you all the best - hang in there!
Tony.
— Begin quote from “keliza52”
Hi! I too have stopped the topamax. I took 25 mg daily for 3 weeks with no S/E’s and still had headaches with 24/7 dizziness . After the three weeks I started the 50 mg daily. Was on it for 5 days and turned AGRESSIVE with horrible worrisome thoughts all day. Did not even recognize the agreesive behavior…my family pointed it out as nicely as they could without trying to hurt my feelings or derail my treatment. However when I started having thoughts of death (not mine) all day long I had to stop. This scared me. Took 3 days to feel more like my normal dizzy self.
My disability is up soon and I am in a constant state of panic about how I will handle my high pressure job. Any advice is welcome. Thank you!
Karen
— End quote
Hi Karen,
so sorry to hear what you’re going through. Again though, I wonder how many of us need a much slower titration than our medical advisors seem to be giving us? They all seem to be recommending similar tritration schedules: start at 25mg for a couple of weeks, then jump to 50mg, then 75mg, etc, etc. Listening to many people’s experience’s, this is waaay too quick for us MAVVers. Taking into account everyone’s story and having been through the experience myself, I would say (assuming there’s a choice of 2 different dosage sizes: 15 and 25mg), start at 15mg for a couple of weeks, or until any side-effects have dissipated, then move to 25mg, then 30mg, then 40mg, then 45mg, then 50mg, etc. Each time, only move higher when the side-effects are under control and the patient is ‘coping’ at that dose! I completely understand that Topamax will not be suitable for many people, but I can’t help wondering how many people are prematurely giving up on not just this, but other drug trials, because the medics propose dosage tritration schedules that are simply too steep! Even when I moved from only 50 to 60mg after being 7 months or so on the Topamax, my system kicked against the increased dosage! But after a few weeks it settled down, and improvements started to happen.
When I fell apart at 50mg, after jumping from 25mg, and spoke to my neurologist (almost in tears as I was falling apart anxiety and emotion-wise after 5 days at 50mg), he stated matter-of-factly, “of yes, lot’s of people struggle with this, just come back down to 25mg and stay there for a few more weeks…”!! IT was such a nonchalant reply. I just think doctors need to be more aware of the difficulties us MAVVers seem likely to face when tritrating too quickly on these drugs! I was completely, 100% convinced that Topamax and my-system would never get along, and yet 9 months later, having crept up to 60mg, the 24/7 dizziness that I’ve had for almost 3 years is starting to recede! Just food for thought…
I wish you all the best Karen,
Tony.
Hi Tony: thanks for your insight. I have a call into my neuro now (she always takes her time calling back) and will discuss staying on the topamax 25 for now since I really had no side effects at that dose. It gives me hope to hear that you were able to handle the topamax by titrating up so slowly and that you finally have some relief. Do you know of anyone who actually stayed at the lower doses and got better? I am also going to request another week off to see if I can calm down a little. It seems just the thought of going to work makes the dizziness worse. I have been like this since February and everything in my life revolves around my 24/7 headaches and dizziness. So like I said…after I talk to my neuro (who is also very matter of fact) I will seriously consider the 25 mg and maybe then I should half a tab and take 37.5 since I already have the 25 mg tabs. Tony, thank you so much for your thoughts and caring and for sharing your struggle. This site and it members have been a blessing because I know I am not alone! Take care,
Karen
Hi Karen
I’ve had a lot of success on topamax and had to increase my dosage very slowly as well… I take the 15mg. sprinkle caps (lowest dose manufactured). I usually max out at 75 mg. per day broken up into 15 or 30mg. before meals and one at night. You really have to play with these meds to get them to fit your condition and life while working with any side effects that might crop up. I also have to watch my diet, sleep, and stress triggers. So far, I haven’t been able to expect 100% remission just from medication because to do so would just mean increasing side effects, adding meds, etc. rather than opting to do the difficult work of eliminating or avoiding triggers whenever possible. This is a difficult condition to wrangle with.
Gail
Hi Gail
Thanks for your input. I didn’t even know that topamax came in sprinkle caps. I will ask my neuro about this. I really thought I was taking it slow starting with the 25 mg for 2 wks but obviously I was wrong. So I will go back to the lower dose I started with. I am also doing everything else possible to try and beat this: diet (I actuallly now can recognize food triggers that make it worse), vitamin supplements, exercise, chiropractor, neck and shoulder massage and hopefully will give acupuncture a try soon. I am not really expecting to be 100% given all that I’ve read and learned and now that I know slow means SLOW and that you and many others have eventually found some relief I have something to look forward to. Thank you again for sharing. Take care,
Karen
After reading Tony’s post, as I think back to exactly what my doctor friend said, it might not have been “wait 2 weeks” but rather “wait AT LEAST 2 weeks” before increasing the Topamax dose.
Let’s face it, kids - this is powerful stuff.
I also wanted to mention that I’ve noticed that when I’m late for a meal I often start to feel “migraine-y” which means I could either get a headache or start to feel wobbly (I haven’t been full-out dizzy in a long time). Not getting a good night’s sleep can also get me feeling this way. Not eating on time and not sleeping well are triggers to be considered also.
— Begin quote from “keliza52”
Hi Tony: thanks for your insight. I have a call into my neuro now (she always takes her time calling back) and will discuss staying on the topamax 25 for now since I really had no side effects at that dose. It gives me hope to hear that you were able to handle the topamax by titrating up so slowly and that you finally have some relief. Do you know of anyone who actually stayed at the lower doses and got better?
— End quote
Hi Karen,
you’re most welcome! I’m so glad I can start giving something back - this site and its members had been soooo helpful to me over the past couple of years (even if they don’t know it, becuase I’ve just ‘read from afar’)!!
In answer to your question about “Do you know of anyone who actually stayed at the lower doses and got better?”, the answer is yes! The user “Rich2008” was who inspired me to stay on the Topamax through thick and thin, and he got better at 50mg! But only after 3 - 4 months of real struggle with the drug. So hang in there Karen!
I should also mention that I take the Topamax ‘Sprinkle’ capsules, which come in 15 and 25mg sizes (I don’t ‘sprinkle’ them, but just swallow them whole). It’s the combination of 15 and 25mg sizes that allows for a slow, customised titration, such as the 25 > 30 > 40 > 45 > 50 > 60 that I did! Good luck,
Tony
P.S. Oops - also forgot to mention, that I also tried everything to fix my ‘broken’ neck (it felt locked, tense, tight, stiff, achy). I tried acupuncture, chiropratic, physio - it would always return. Since the Topamax has started working, my neck pain has completely gone - it was all down to the migraine mechanism!!
Hi Tony: I did finally speak with my neuro and I actually told her rather than asked her that I was going back to the 25 mg. Apparently she only wants me to go as high as the 50 mg anway. So maybe if I do this slowly I can get it to work. I will try and be patient. I have also requested another week off from work which was granted without any problems since my disability is still in affect. And I am still sticking with the massage and chiro mostly because I do feel good (no relief from dizziness but the headache seems to abate some) for a few days. My husband and I both do the massage and chiro so we are given a couples rate which is fortunately affordable.
So I know you are right and it all comes down to the right combination of meds, vitamins, diet and exercise. This is the healthiest I have eaten in a long time since most of the foods on the migraine diet are healthy. Although I do miss my peanut butter.
Thanks again for your support and encouraging words. I’ll keep you posted and I hope you don’t mind if I write again…I so often get frustated.
Take care,
Karen
Hi ladies, I have a question, when do you take your Topamax dose? After taking my 25mg dose the night before, I couldn’t sleep, my heart was pounding all night and I felt anxious. Had to take an Ativan to get to sleep, but I was also less in a fog yesterday when I woke up,so not sure if the Topamax is doing something. I skipped last nights dose and figured I would take 12.5mg today(during the day) since it made my heart pound. I’m just scared crapless of the side effects of this drug. Especially with how quickly I got anxious and depressed once upping to to the 25mg dose. It was like 30 minutes after taking it I felt sad and hopeless, and dwelling on my dizzy life wishing I didn’t have to live like this. My 4 month old needs me so much and I feel like I have already missed out on so much. Blah! Any advice on the timing of the dose? If this doesn’t work out I may just try another antidepressant. I have an appt with my GP later this week. Might mention Prozac. It doesn’t help that I’m already an anxious person as it is, I wonder if thats why Topamax has caused me these side effects?
Hi…I take my topamax at night because it makes me sleepy. If you read Tony’s earlier posts in this section she takes her doses at different times. It seems everyone has a different reaction to meds and takes them at different times. The topamax at 25 mg does not make me anxious, I am anxious anyway, which is why when I feel a panic attack coming on or I feel heavy headed I take a xanax .25 mg. Maybe(this is not a medical opinion, just mine) your worries over the side effects are adding to your anxiety and believe me I know there is much to worry about. Based on Tony’s experience and some others on this site I am going to try to stick with this for a while. We need something to work. I am sorry you are having such a hard time taking care of your daughter. My children are grown and I have six grandchildren whom I usually spend a lot of time with but that’s not happening since this all started which is seriously depressing for me. Take care,
Karen
I am on 100 mg topamax and take 50 mg in the morning and 50 mg at night. I find that it helps me sleep as well. It doesn’t increase my anxiety and didn’t when I first started, but I was also on Prozac when I started (still am).
Don’t feel worried about using the Ativan while your ramp up on the topamax. It’s temporary and not forever. I still have to use Ativan now, as I’m still experiencing dizziness on the mix I’m on now.
I’ve been at 100 mg for almost 3 weeks now, and have started tappering down off the prozac from 20 mg to 15 mg. It’s just too stimulating for me and I don’t like it. If I need the serotonin boost, I’ll try Zoloft next or go back to Celexa. Or maybe topamax isn’t right for me, but I’ve been on it for just about 9 weeks now I think so I’m not ready to throw in the towel yet.
Are you able to get some good stretches of sleep at night with the baby? I found that was a hard thing for me with the baby and critical to start feeling better in the beginning.
— Begin quote from “mommyrebecca919”
Hi ladies, I have a question, when do you take your Topamax dose?
— End quote
— Begin quote from “keliza52”
If you read Tony’s earlier posts in this section she takes her doses at different times.
— End quote
LOL - I should just set the record straight at this point and say that I’m male, not female! 
— Begin quote from “mommyrebecca919”
After taking my 25mg dose the night before, I couldn’t sleep, my heart was pounding all night and I felt anxious. Had to take an Ativan to get to sleep, but I was also less in a fog yesterday when I woke up,so not sure if the Topamax is doing something. I skipped last nights dose and figured I would take 12.5mg today(during the day) since it made my heart pound. I’m just scared crapless of the side effects of this drug. Especially with how quickly I got anxious and depressed once upping to to the 25mg dose. …It doesn’t help that I’m already an anxious person as it is, I wonder if thats why Topamax has caused me these side effects?
— End quote
Hi rebecca,
I too was already a ‘worrier’ type before trying the Topamax (I had battled panic attacks and anxiety throughout my degree and a stressful job following that for seevral years). I completely emotionally collapsed 5 days into 50mg - I was just swamped and overwhelmed with ‘can’t cope’ feelings and massive anxiety. So I really do understand. Looking back, the first 2 jumps in dosage were too big for me - first, I started on 25mg, then jumped after 2 weeks to 50mg - it was just too much. The side effects for me even at 25mg were just huge - massive nausea, increased dizziness, etc. I was completely, 100% convinced that me and this drug would not get along - the ONLY thing that kept me going, was Rich2008’s story on this site! I kept repeating it over and over, like some kind of mantra…“hang in there…hang in there…it’ll all come good…”. I now know for sure, that it’s all to do with the speed and amount of the titration in dosage. Give the body a small enough amount, for long enough, and it’ll likely settle down - the system will make adjustments to compensate, and the side-effects will minimise.
The only time I ever took one dosage per day was when I started, at 25mg (because I couldn’t easily split the dose, as it was one capsule - I use gelatin capsules, and not tablets which can be cut, although I guess I could open the capusle and split the contents). Since then, I have always split the dosage - taking half (or as near to half as can be - e.g. if I’m taking 25 + 15 = 40, then it’s uneven, but hopefully you get my point) at night before bed, and the other half in the morning, roughly 12 hours later. I do this to try and avoid ‘spikes’ in the amount that’s in my system, and keep it more even, if that makes sense…? So, can you try 12.5 at night, and 12.5mg at, say, 11am? Or, if you’re struggling with a total of 25mg per day, can you try (1/4 of a tablet =) 6.25mg at night, and 6.25mg at 11am in the morning? Willing you to pull through, rebecca - best wishes,
Tony (not Toni!) 
— Begin quote from “keliza52”
Hi Tony: I did finally speak with my neuro and I actually told her rather than asked her that I was going back to the 25 mg. Apparently she only wants me to go as high as the 50 mg anway. So maybe if I do this slowly I can get it to work. I will try and be patient. …This is the healthiest I have eaten in a long time since most of the foods on the migraine diet are healthy. …Thanks again for your support and encouraging words. I’ll keep you posted and I hope you don’t mind if I write again…I so often get frustated.
Take care,
Karen
— End quote
Hi Karen,
Good for you! Hoenstly, I would take the view that there’s no time limit here - I know how frustrating it is - I have been on the Topamax for 10 months now, I think, and I’m still only at 60mg!! I remember thinking, this is ridiculous, other drugs only takes weeks to work - if it takes this long, and is this hard a road, it can’t be the drug for me. I was on Pizotifen originally, and that worked wonders within just 3 weeks (but that’s another story)!! But time can have a very strange elastic quality - feels slow ‘in the moment’ sometimes, but seems to have flown past when you look back in retrospect!! Now, looking back, 10 months seems to have flown past, and even though I’m not there yet and will have to go up further from 60mg I suspect, it all doesn’t seem to have been so bad. But I only have to look at my ‘dizzy-diary’ to remind myself of just how long and hard a struggle it was.
Remember, if any dosage is proving too much, lower it, settle, and then move forward, even if it’s inch by inch (I know this is only my view, but I really feel there might be lot’s of people trying to follow titration schedules that are simply unrealistic, and instead of being flexible, simply giving up if they can’t make them work ‘as prescribed’).
I also hear you re. the migraine diet. I also have tried to do the right things thorughout this - for 3 years, I’ve dragged my dizzy a**e to the gym, been on the migraine diet for 2 years almost - hell, I still haven’t really found any specific migraine triggers, but I was determined to keep the diet going throughout, because that reduces an entire range of variables - keep the diet and lifestyle completely static, and then any other changes are almost purely down to drugs. Chicken breast rolls or sandwiches that I make at home every morning, for lunch at work every day, for the past 2 years - how dull is that??!! :shock: But it’ll all be worth it if I can break this thing.
I’d love it if you write again - it can be a lonely road, this MAV, and to have this site and feel that your journey is being shared with others is really comforting. Good luck Karen,
Tony.
Hi Tony:
Sorry abouth the Tony/Toni confusion. Either or, you are an inspiration. As of two days ago I have decided to just start with the topamax 12.5 mg at night. When I feel comfortable with that I will add another 12.5 maybe like you suggessted sometime during the day. Then take it up from there if I can. I just have to remember to be patient. And as long as I have no serious S/E’s I will continue. Everything else like the exercise, diet, etc. can’t hurt anyway so I might as well keep at it. You are right though eating is so boring…fish, turkey, cereal, certain fruit, certain fresh veg’s and I haven’t had a glass of wine in months. So often I am nauseated and I have to force myself to eat, not sure if that’s the MAV or the meds, probably both I’m sure. Tony thanks again for your encouragement and kind words!
Take care,
Karen