Thanks for posting a success story – it’s fantastic to hear that you’re doing well on the Topamax. Congratulations on making it to where you are before the holidays. You have done a great job of pushing this far. (I’m also secretly glad to hear that you haven’t stayed on the diet – I’ve been straying myself. I’ve stayed off alcohol and caffeine, but the rest of it has really been a challenge, especially cheese and chocolate when I’m stressed
I’m holding at 62.5 on the Topamax for a bit and will see if that’s enough for me. It’s been hard to tell if it’s working since it has taken me three weeks or so for my symptoms to settle down after a dose increase and I’ve been going up every 3 weeks. If it’s not, I’ll go up again after the holidays. Stories like yours are the ones that keep me upping the dose until I get to the level I need. Thanks for sharing!
It is fantastic and wonderful to hear of your success!!!
Also, reading your post has come at a perfect time for me having just starting out on Topamax after Noritriptyline hasn’t worked for me. I am inspired and ever the more hopefull! Thank you for you post and good luck for continued “stability”.
Hi Leslie,
At first, yes I was taking xanax and valium. However, my MAV doc is not a firm believer in benzos for MAV treatment. He said it slows down the healing process. That may or may not be true, but having that xanax was sure making my MAV alot easier! Anways, after awhile, I got used to not having benzos. My doc wouldnt give me an rx anyways, so I was out of luck. It was horrible at first, but I managed. I was only taking a small dose when needed. Like .25 mg. It did help. But these days, I do not need them.
Mary Lee,
I was laughing out loud at your post! I totally get what u mean about the diet! I hope you get better with topamax!
Give it some time…it took dinosaur yrs for me to work lol jk but thats how long it felt like!! It may take three months…ur doing the right thing going slow!
Lisa <3
I’m finishing up my semester and about to up my Topamax to 200mg. I already bumped it up a little and added 25mg in the morning to my 100mg at night a few weeks ago and that went pretty good (jumped the gun a little and tried 50mg in the morning and side effects are too much so I’m backing it down until Sunday when I’ve got a month off to go through side effects hell).
I had about a week of improvement on Topamax before I had a major setback, but it was enough for me to continue on with Topamax. It’s just a timing issue because yes, like you said, getting on it is hell, it sucks.
I’m gonna be really aggressive getting to 200mg and just get it over with. I mean really how bad can it be? :shock: (yes, I know how bad it will be)
Anyway, sooo happy for you!!! Keep hanging in there and you’ll be 100% especially if you can get through the holiday season
I too am weary of calling my Topamax experience a “success” yet, but I have been at 100mgs for about 2 weeks now and feeling more positive. I haven’t lived with full on dizziness for about two years now, but with the Topamax I have noticed my vestibular problems (head and eye movements, balance, fog head) have improved. I am mostly taking Topa for Persistent Migraine Aura I have been left with 24/7 for the last two years. Although it is still there, I have noticed that this last week or so I am not constantly thinking about it. I don’t know if the symptoms are lessening or this drug is somehow helping me not concentrate on them, but somehow I am feeling better than I have in a long time. The good news is, one is supposed to see benefits at the proper dose after 3 or 4 months and I am only at week two. I hope things only continue to improve.
Also, for all of you out there who scare yourself with the “Dopamax” postings, stop reading them. Like Lisa said, any side effects Topa gives you is mild and worth it. It lasts a few days and you just push through it. People might complain that it makes you feel slow or dumb, but I’ve had brain fog for three years, so who really cares?!?! =) I told myself that any bad side effect could be worth have my life back and I have had a few moments in the last few days where I actually felt happy and not controlled by this thing that has controlled my life the last three years. Don’t let other peoples experiences scare you. I avoided Topa for a year because of horror stories. Just a month ago I was about to give up. Now I am glad I stuck with it. I am still not 100% and could possibly slip again, but for the moment am feeling positive about this drug and where I am on it.
Just to put a timeframe from someone who was very aggressive with getting on Topamax (please note, I totally respect how everyone gets on Topamax, this was my personal choice based on many factors).
Started on Oct 03 at 25mg and by Oct 19 had reached 100mg. All doses where at night.
My Topamax side-effects were still pretty high around Oct 26 but by Nov 02 I had made a note that I was noticing some slight improvements in my MAV symptoms so…side-efects had eased up (pretty much gone) and MAV symptoms were improving…GREAT SIGN!
Nov 17 added additional 25mg in the morning without noticeable side-effects
Honestly once I got through getting on Topamax it’s like having a baby, you kinda forget about the “pain” of it and just move forward. That’s all we can do I’ve been highly symptomatic 24/7 for a year, so it’s not surprising that I have to up my dose.
Here’s to all of us who will be able to write a success story like Beautiful Lisa!!!
I started at 12.5mgs around June of this year and hit 100mgs on Thanksgiving. I went very slow. Very few side effects and they only came when I titrated up. I must say the benefits were very, very hard to notice and slow to come. They still may not totally be there, which is why I am tepid about saying Topamax is working. All I know is that I am having some improvement and it did not start until I hit 100mgs.
Wow! This is all very encouraging stuff I’m reading! I’m gonna give Verapamil a few more months and if nothing happens I’m going for it! What do I have to lose? I already pretty much lost all of who I used to be.
The only negative thing about Topamax (which is probably a positive for most people) is weight loss. As someone who was always very thin and enjoys weightlifting, it’s been difficult losing about 10 pounds the last few months, none of my jeans fit anymore!
Darren,
I actually go to an Ent doctor.He specializes in MAV. I went to a nuero but he had no idea, go figure! Thanks for the post! How r u? Still on topa
Lisa
— End quote
Ive been on 100mg for 9 weeks now, and I think it just started kickin in. I think my dizziness has been a little better for the past week or two. I still have a few more weeks till I get to the 3 month mark, I hear thats when this med takes full effect, but Im hopefull that things will get even better if it is indeed actually working.
Hello all,
Figures the day after I post this…I crashed. I have been feelinf awful for four days now. Painful headaches and dizziness. I dont know where it came from? I have been eating chocolate which I stopped three days ago, but I always have. Im hysterical rightbow…omg this is just plain awful. im trying to figure this out
Lisa sorry to hear this but try not to worry too much yet. Even on meds that are working people can have breakthrough migraines which still flare up. The thing is that once you are on meds, you will hopefully recover much quicker than when you were not on meds. The fact that Topamax has worked so well for you I can’t see it would just stop working. I think if you just told tight for a bit you will probably find things settle down back to where they were. The other consideration is triggers - maybe you have overloaded things trying to get back to normal and your MAV brain is struggling. Things like stress, overwork, slipping on the diet etc may have mounted up to overflow ‘the jug’ as Dr S likes to call it. I hope you are ok and feel better very soon xx
Lisa, don’t despair. These crashes happen, sometimes out of the blue, sometimes without rhyme or reason. I think many of us, myself included, have had quite extreme, and maybe like yourself, even hysterical reactions to them because they ARE unbelievably upsetting. Especially after a good spell when hopes have been raised that you’ve turned a corner. A good cry always does me good at such times, perverse as that sounds, but trying to figure it out just tortured me when I was feeling so bad already. I used to leave all the detective work til when I began to feel better. It IS useful if you can come up with answers but for the time being try to chill a bit and let your body and mind rest as much as you can.
Whatever the cause - SEs of meds, diet, a combination of both, or just 'one of those unexplained MAV episodes - I wish you through it quickly. Keep your spirits up as best you can and tell yourself, as we all so often have to do, “This too will pass”. And it will Lisa.
I agree with everyone else. I had a crash couple of weeks ago and thought that 90mg of Cymbalta pooped out on me. But a week later I was back to where I was before the crash happened. So think if you give it time you should be back to where you were. Unfortunately this is just the way MAV works for some people. Some people have intermittent attacks even whilst they are on meds where as others are lucky enough to remain stable throughout. Generally those that have attacks in between will recover much faster as long as they r on the meds thats workin for them
Thank you all so very much. This is indeed so sad and horrible. I have been under alot of stress, working hard, cheating on the diet and def pushing myself to the limit. I need to relax and chill out …take a chill pill lol like nabeel said
I will get through this! Thanks for the support!!! X x
Hello all,
Just wanted to recap everyone! I am doing very well again. I recovered very quickly from the crash. Topamax is still my lifesaver. Some days believe it or not…I forget I have MAV. I am at about 85% sometimes almost 90%! Its amazing. I hope to continue this way. I hope everyone had a wonderful holiday!
I hope you get better with topamax!
im trying to figure this out