So today is my [size=150]8th[/size] day of taking topamax! The first three days where [size=150]horrible!! [/size]I almost gave up- but because I read the success stories from this drug, I decided to stick with it. By day 7, I was back the way I felt before I started taking topamax. Last night, I increased my dosage to 50 mgs - as per the doctor. Today, I feel extra dizzy, but this is expected bc of the dosage increase. My doctor says 6 weeks is enough time to tell if this medicine will do the job or not. I’m hoping it will! This is the first med I’ve tried for my MAV. Anybody have any input? I will keep everyone updated on this trial. Success or not.
HI there BB!!!
You are a week ahead of me on the Topamax roller coaster.
I started at 12.5 mg, only at night. Will increase in 12.5mg steps to help reduce the side effects.
Fingers crossed for both of us!!
Lol…it def is a roller coaster. However, at the end of day 7 things did calm down,but now that I am at 50 mgs back to the beginning.
Wishing you the best!!!
That is about right. I was usually back to normal by about day 6 or so but the first few days every time you change dosages stink, that is for sure. It was very consistent. Every time I up my dosage I felt like crap the exact same amount of time and was back to “normal” in 6 days.
It really helped me. It completely knocked out the rocking sensations that I had been having for almost a year. I started seeing some pretty significant improvement within a month, though my doc told me that it can take up to 2 months to see improvement with Topamax. The only bad side effect I have had is that I had a nasty kidney stone that may or may not have been because of the Topamax (it probably was, but there is no way to prove it). Luckily I have just had the one, so I’ll keep my fingers crossed there.
Good luck–I hope it helps you out the way it helped me!
So today is day 14 on the topamax. I am currently at 50 mgs and have been for 7 days now. While, I havent noticed any improvements yet I feel as though my body as adjusted to topamax. I stil feel a bit sluggish and tired but I am going to stick it out. At this point, I am not going to increase the dosage. I will give it some more time. Hope everyone is doing well!
Hey everyone! I have successfully made it up to 100 mgs! 50 mg in the morn and 50 mg at night. I still have not noticed any improvements yet but I am so glad I made it to the 100 mg point. It was not easy getting here, as it made my symptoms worse each time I increased and also made me feel tired. However, now I am back to feeling like I did when I started. My doctor said to give it 6 weeks at the 100mg dose and see how things go. I am hoping for the best! Hope everyone is doing well!
Yay! You made it to 100!
I just got to 50 three days ago, and feel awful. Altho just a teeny bit better today, I just got back from a short walk. Wasn’t able to do that on days one and two.
Still no improvements in the MAV symptoms tho? That’s a bummer, but maybe 100 will be the magic number for you.
Thanks for the reply! So glad u are on ur way up and going strong!! I know we started topamax at almost the same time and have so much in common with our symptoms and all. Actually, I shouldnt say no improvement. My ear fullness has has pretty much vanished,but I guess that never really bothered me so much lol. the chronic dizziness and just feeling off is what gets me. I cant drive …I havent worked in three months…its bad. But hopefully it will now get better!! Are u planning to go up to 100 mg too? Any improvements yet? How about with driving?
Hi BB -
At what doseage did your ear fullness go away? My doctor only had me going to 75 mg until my follow up visit, which isn’t until the 12th. My ear issues are really driving me crazy and I would do anything for a little relief. The Topamax has cut the severity of the verito quite a bit so I do think its working. I’m hoping he will increase my dose after my next appoinment. I’ve even been thinking about calling and asking if I can increase it before my next visit.
Valium helped me to be able to drive, almost from the start. It wasn’t easy, and I couldn’t do it every day. Sometimes if I had a doctor appointment I had to take twice the normal dose and drink a latte to stay awake to make it to the appt!! Valium has helped me in the past with dizziness; I’ve had an acute attack like this once before, but no diagnosis as it was over 10 years ago, and they just gave me Valium and we tried Meclizine as well. That helped but I just slept all day! And put on a ton of weight not good.
Anyway, I can drive almost whenever I need to now. I do need to take some Xanax usually, as I do feel a lot of anxiety around driving. Have had rotational vertigo attacks behind the wheel if I don’t take anything first and MAN is that ever scary!!!
My ear fullness was getting a bit better, but now has got worse again and as of yesterday I am now getting headaches again. Also, rotational vertigo in the mornings as of a couple of days ago! Bummer I thought I was on the right track, not sure what is causing it to go downhill like this. Maybe just the increase in the Topamax dose? I know it can make you feel awful. Now that I think about it, Jamie warned me that might happen…I will stick it out a few more days & then may need to back off a little bit on the Topamax for a few days or something.
Am going over my diet & stuff, making sure I am not sabotaging myself. I did eat a bit too much over the birthday week maybe it’s just catching up with me Lol!!!
My ear fullness was one of those symptoms that didnt bother me as much as the dizziness and blurry vision. However, it was annoying. I would say a week after I started the topamax at 25 mg, it was gone. I still have the slight ringing in my ears at times but its def alot better. How bad is your ear fullness?
Ugh, what a mess this all is right?! Valium worked for me in the beginning too. Ironically, my gp, gave me a rx for valium for my chronic headaches. I was so scared to take it bc I never had before. It took away my dizziness and that was that. This was before I was diagnosed with MAV.Later down the road, when I actually was diagnosed, the migraine specialist didnt believe in me taking a benzo to help with the dizziness. My gp wont give me any more valium but she gave me a script for five xanax. I didnt even use it. I figured, why bother? Its so annoying when something works and you cant get it, its not like I used it everyday. It helped me get things done, I could somewhat function. Anyway, I hope your topamax symptoms pass. Are you working now? Ive been lucky enough to just be home and get through the worst here. Dont worry, if your body can handle 50 mg …it most likely will be able to handle 100 mg. I really didnt have any se, except for the increase of symptoms every time i went up a dose. Its also a major shock when you start taking it during the day! Good luck!
Hi BB -
My earfullness is really bad. It gets really bad right before my period. Its hard to hear and hurts to hear all at the same time. So frustrating. Its really uncomfortable being in any kind of noisy situation so going out to eat is a thing of the past! Thats why all the ENTs are so convinced I have Meneire’s. Me not so much, I dont have the hearing loss, and I’m not responding to any of the Meniere’s medications. The topamax is helping the veritgo and the mild daily dizziness so I really think it is migraine.
I am not working right now, off since January, hope to be able to go back in November. Would be completely helpless without my benzos!!
Sad that so many docs think they are so bad for you, they get such a bad rap but really are a wonder drug for us MAVers.
Maybe if you showed your specialist some of the info from this forum it would help? Scott has all the best links & info.
Anyway I am going to hang in there with the topa, mostly I think the fatigue is getting me down right now. Going back to work means getting up around 5, getting home around 6, exhausting even when I am feeling good!! Maybe I should look for other work, but you know in these times a job is a blessing that’s for sure!
Thanks for the support!
It just goes to show that we all may have the same symptoms but dif meds and dif doses Work dif for each of us. It would be so wonderful to have a cure all pill right? Do u also experience any rocking? Or trouble driving? For me i feel better driving. Now on topamax i feel drunk when i drive. Are your symptoms 24/7? I know two people who have meineres and they have episodes and know when they are coming vs. Me… I have my symptoms 24/7.
Everyone once awhile a have very brief quick rocking. I have random dizziness, general “mushy” head as I like to call it, my arms go numb from the elbow down, I get full blown 12 hr long vertigo spells, low level headaches almost daily and the occasional bad bad headache and the ear stuff. The ear issues are 24/7, everything else comes and goes but it all happens on at least a weekly basis.
I have started getting that tingly arm thing too!! And, today my feet started up with it!!
The good thing is, I read someone’s comment that if you get the tingles with Topamax, it’s a good sign it will work for you!
A good reason to hang in there.
Wanted to be sure you saw my post re Mirena IUD as we’d talked about it before.
Docs on a UK website now say to be used with caution in women with a history of migraine. This is in none of the literature I got with my Mirena, was not mentioned at the class I went to, and Kaiser did not know of any contraindications at least that I am aware of.
I started a thread in Women’s Biz and will do some more research on it. But boy that makes me mad! We here in the US don’t get a lot of the info we should about meds, good or bad.
Hope you are doing well!!
Thanks so much for the update! Geez, we just cant win can we?? I may just go with the paragard iud which has no hormones at all. Its the copper iud. My headaches started back when I started birth control pills last october, i feel like it may be a trigger for me, so im going to stay clear of hormones. have u ever heard of any success with paragard?
Thanks again for your support!
I remember that it was one of the options, and I was so scared of it being made of copper that I chose the Mirena (they let us look at and handle samples of both in this class I took) because it was soft plastic! Little did I know…
I think you are right to steer clear of hormones right now; this is ANOTHER thing I have to talk with doc about! Geeez!!!