Hi everyone,
My neurologist wanted to start me on Topamax and I took the first pill last night and today my walking is worse. I’m more wobbily, equilibrium feels more off. Do you think I should stop taking this medicine? Or do you think I should just keep taking it? I don’t want to get worse because this condition is already so debilitating. Thanks
Dizzyinaz -
I think you should keep taking it. When I first started taking the Verapamil, I felt the same way until my body got used to it, probably about a week or two. I have never taken Topamax, but from what I understand, it can take awhile to work. I know a girl that takes it at my hair salon, and has really good luck with it. She literally has no MAV symptoms any more. The only side effect she noticed was weight loss and tingling. She said she only gets the tingling if she drinks caffeine while taking it. I am not sure why though. She has been on it for five years. She is actually at a point where she is thinking about weaning off of it and taking no meds. She thinks her bout with MAV maybe over. I hope so for her sake.
Nance
Thanks Nance,
Do you know how many mg she takes in one day? Did she say how long it took her before she started to feel better? I can handle ever other symptom of MAV except for the equilibrium, spongey feeling when walking. I also have motion sensitivity. Whenever I move at all I can feel the motion echo in my head. It’s horrible. I hate this feeling also. If these symptoms would go away or at least come in spurts I could handle this so much better.
I was so scared to take Topamax. I actually didn’t want to take it yesterday but my husband begged me to because he wants me to get better. I hate MAV so much! I hate the way how our brains take awhile to compensate.
I hope you’re feeling well today. I cant wait until I’m at least 80% of myself! That would be a dream come true for me! I hope some say soon I’ll be there! 
I would recomend to keep giving it a try at least for a couple of weeks, preferably a few weeks. Topomax has a lot of side effects that where off within a couple weeks to a couple months.
But in all cases with any medication, if you have any questions, or doubts, call your doctors office and talk to them about it.
Brian
Dizzyinaz -
I am actually going to the hair salon to get my hair highlighted tomorrow, can you believe it? I am thinking it will help my spirits. I just hope the mirrors don’t get me dizzy. Anyways, I will see that girl I told you about tomorrow. I will ask her some questions about the Topamax. I’ll find out how long it took her to feel better, the mg etc. I’ll let you know what I find out right away. I am about 85-90% today. The weather here jumped to almost 60 degrees! I feel alittle fullness and general dizziness but I think it maybe the weather change. Lovely Illinois weather! :lol:
Nance
Thanks Nance!
That would be great! I’m glad you’re feeling well today!
Thanks Brian for always helping me! Thank you everyone for always helping me!
— Begin quote from “nance”
Dizzyinaz -
I am actually going to the hair salon to get my hair highlighted tomorrow, can you believe it? I am thinking it will help my spirits. I just hope the mirrors don’t get me dizzy. Anyways, I will see that girl I told you about tomorrow. I will ask her some questions about the Topamax. I’ll find out how long it took her to feel better, the mg etc. I’ll let you know what I find out right away. I am about 85-90% today. The weather here jumped to almost 60 degrees! I feel alittle fullness and general dizziness but I think it maybe the weather change. Lovely Illinois weather! :lol:
Nance
— End quote
I’d be interested in hearing about this too. Also, was this girl officially diagnosed with MAV?
When I started my topamax, I titrated at less than half the recommended dosage to ease up on side-effects. Just FYI. Not sure if that would help you (with the help of your doctor), but instead of going up by 25mg at a time, I went up by less than 12mg and it DID help me cope better.
Rich
Hi Dizzyinaz
I started on Topamax in December. I’d suggest keeping taking it for a few weeks at least - give it a try otherwise in a few months you might look back and wonder if it could have helped you…
It took me a while to get used to the side effects and only a few weeks ago I posted that I was having difficulty getting used to the side effects, but they have virtually gone. It will take perseverence. Also - after taking just one tablet - you could be having a reaction to something else, maybe something you ate or a cold you are getting, the weather, etc. Have they given you a titration schedule? From what I have read the slower you titrate up the better and easier it will be to get used to the tablet.
Hope that helps, and hope you are feeling any better now?
Take care
Tess
There’s a joke that many call Topamax “Dope-a-max” due to it’s affects on cognitive ability (a.k.a. all kinds of brain fog/problems and you really become stooopid shall we say!). Curious to know those of you who are taking it or took it (Rich, Tess, etc), did you find that Topamax caused you to have more brain fog? My doc does not recommend it for me due to this and the type of job I have (plus the fact that I am already experiencing brain fog problems now.) Thanks, Bonnie
Dizzyinaz - the thing to remember in taking ANY new med is 1. you will feel its side affects/enhanced symptoms initially when you start taking it. In other words, it is not uncommon to feel more dizzy or tired or out of it initially until your body gets used to the med. 2. most meds you have to stay on for at least 3-4 months to even see if it is going to work. It takes that long to totallly get into your system and start working (if it is going to.) I know, this is tough to do, but there really isn’t any other way of knowing if a med will work other than giving it some time.
Dizzyinaz and bcrelief -
I went to the hair salon yesterday and she (the girl I told you about) was working. She was diagnosed with MAV at the age of 15 years old. She had terrible headaches (migraines) and vertigo. She missed out on alot of activities. Can you imagine being a teenager and having this terrible condition? She is now 21 years old. She is starting to ween off the Topamax because she has done so well for so long. She said the Topamax took about 1 month to 1 1/2 months to actually work on her. The side effects totally went away after awhile. She takes 125 mg. She said it does make her feel groggy in the morning but then the grogginess fades. She has no dizziness, no vertigo only an occasional headache. She swears by it. She sees a neurologist out of town. He knew right away that it was related to migraine. She seems to be doing really good. She works, goes out all the time, lives a normal life! She is the first person that I have met “in person” that has MAV. It made me feel good to see that there are success stories out there.
Nance
Thanks Nance, bcrelief
It gives me hope that maybe this medicine will work. I hope so much that it will! I want to get better as soon as I can so I can take my little 2 year old son fun places like I used too. That’s my worst fear that I’ll stay like this for a really long time and he’ll always remember me as being dizzy and not as I was, a normal, mom. Thanks everyone for your help. Hopefully soon, mabe by summer (fingers crossed) I’ll be posting a success story!
Thanks for the update, Nance. By chance, do you happen to know if that girl had other symptoms, such as the light sensitivity and brain fog? I’m not surprised that the topamax worked for the dizziness and headaches, but i wonder how good it is for other symptoms?
Thanks again, Bonnie
— Begin quote from “bcrelief”
There’s a joke that many call Topamax “Dope-a-max” due to it’s affects on cognitive ability (a.k.a. all kinds of brain fog/problems and you really become stooopid shall we say!). Curious to know those of you who are taking it or took it (Rich, Tess, etc), did you find that Topamax caused you to have more brain fog? My doc does not recommend it for me due to this and the type of job I have (plus the fact that I am already experiencing brain fog problems now.) Thanks, Bonnie
— End quote
Bonnie,
I took Topamax for two months last summer. It did seriously magnify my already existing brain fog. I had to stop it because of this. It was either stop the Topamax trial or take a leave of absence from work. I was a bumbling idiot and it was making me very depressed. I am a typical overachiever, and not being able to work even close to my potential because of the Topamax was frustrating and depressing. However, for those who do not work outside the home or who do not have jobs that require intense concentration, I recommend sticking it out to see if the brain fog lifts. It does for some. Bonnie, it sounds like your job does require concentration, so I would not recommend it for you unless you can’t find anything else that works. Just me two cents worth…
Marci
Bonnie, and all,
I did also have increased brain fog, so much that I really felt like I couldn’t do my job for a few weeks. I couldn’t think, and stumbled through basic tasks. Eg in meetings when people asked me questions I really struggled with answers and felt really dopey. I couldn’t link thoughts together - the nickname is very apt. However this didn’t last too long. I also felt really depressed and had no energy. I rested a lot and drank tons of water, and 2.5 months in I’m really back to normal. I’m left with a very slight stutter and I have to think about what I say but that’s pretty much it.
I had started to see improvement in the side effects by 5-6 weeks I’d guess, but if I hadn’t started to see any improvement at all, as I think others on the board hadn’t, it would have been very difficult to tolerate the topamax for any longer. My job is very demanding and does require intense concentration, I spend a lot of time looking at data and spreadsheets, so you can be on it if you have a demanding job, but my opinion is that it depends on how soon the side effects start to go.
I’d suggest titrating very slowly - I’m not at the recommeded 100mg dose yet, I stopped at 75mg, and it was only after I stopped titrating up that the side effects started to subside.
Whether it’s helping me with the migraines I’m still assessing (as I also have visual vertigo so this could also be causing current symptoms). But it seems to have such a good success rate with migraine that for me it’s worth a shot, with the low level of side effects that I have now. It’s so difficult with these medications - it’s only the second one I’ve tried and I know the ssris are also worth a shot, although a lot of people have said they make you feel like a zombie…
Thanks Tess,
I still feel the same on Topamax. It’s making my dizziness/ disequilibrium worse and I also feel more tired. I feel like I’m constantly bouncing all the time like I’m ona a sponge. I just want this horrible feeling to go away. I also feel a little burning in my throat. I also have muscle spasms at night, but I don’t know if that is from the drug or from MAV. On Wednesday I’m supposed to up my does to 50mg a day, but I don’t think I’m going to. I’m going to stick with 25 mg a day and talk with my neurologist. I go back on March 18, to see him.
How are you doing on Topamax?
Hi Dizzyinaz,
I’m so sorry to hear you are still having so much trouble with the Topamax and I read your other post too. I really feel for you - this is such a horrible illness and it’s so frustrating, especially when you are doing everything you can to get better and despite that you are getting worse. Did the worsening of symptoms start straight after starting the Topamax? I definitely had a huge increase in tiredness and some increase in heartburn for a short time, which may be causing your burning in your throat?? I had tingling in my feet too. But I didn’t get any worsening in my dizziness or any disequilibrium symptoms or the walking.
I’m doing ok on the Topamax now. The side effects have pretty much disappeared, and I think it is helping but I’m not really sure. I’m not having little spins, and at work especially where I spend all day in flourescent lighting in meeting rooms or at a computer I can get through a day pretty well. I did have a major episode of vertigo a couple of weeks ago and two weeks later I’m doing pretty ok for two weeks later. Whether that’s because of the Topamax or not I don’t know. Although I am considering whether to try an SSRI instead as they do seem to have good results. The driving continues to really be an issue for me which I don’t think the Topamax helps me with.
I think your plan to stick with the dose you are on is a good one, rather than go up - you can go up later, and it’s not long until you see your Neurologist. I hope you can bear it till then (((hugs))). Do you work or do you find that you aren’t able to at the moment? Have you tried anything else?
Take care, and keep us posted. I’ll read your other posts too so just in case you have answered these questions elsewhere.
Hi Tess,
I’m going to try and stick it out with Topamax until I see my neurologist until next week. Then I think I’m going to switch medication. I also made an appoinment with a neurotologist so I’m going to get a second opinion about what is going on with me. I haven’t really gotten a diagnosis as having migraine associated vertigo but my neurologist is treating me as having that, since I have a lot of the symptoms, so maybe the neurotologist will nor more about what to do. I can live with every other symptom I have its just this awful disequilibrium is terrible and I want it to go away so badly.
I really hope Topamax helps you. I hope one day you will be symptom free from this horrible disease.
dizzynaz what exactly are your symptoms?