That’s great that you can chat online with pharmacist. What pharmacy do you use?
Anyway, all of this is awful. Hang in there.
I have used rite aid and walgreens(you just have to register…it is free) which is great. I do wonder about the quality of the pharmacists, but I know they do research as you ask them questions. Thanks again.
The only reason I mention the eye issues with Topamax is that you just can’t afford to ignore them. They are rare, but when they happen they are serious and you have to deal with them immediately. The good news is that i think they are rather obvious. I don’t think it is one of those things where you have to ask yourself if something is wrong. You will know something is wrong with your eyes, and if something happens, talk to your doctor IMMEDIATELY and they will probably pull you off of the Topamax.
Staying on 25mg is a noble goal, but I think most of the folk on here have found relief more in the 100-150mg range. I personally found 100mg works good for me. The initial dizziness is killer and made me really question what the hell I was doing, but after 9-months of failed trials of Verapamil and Nortriptyline, Topamax completely knocked out the rocking vertigo that neither of the other medications touched at all. I personally was already seeing good results in about a month and at only 75mg, but that is not typical. Most people need about 2 months before they see results. For whatever reason, the Topamax was really effective for me.
A lot has been made about Topamax’s tendency to make people feel “dumb” but at 100mg it doesn’t really seem to do much to make me feel slow at all. If you did a before/after test with me would I be 5 or 10% less than I am at full power? Maybe, but I’m at least 25-50% BETTER than I am with MAV, so I still consider it a net positive!
Thanks for your response and concern. I did split the dose last night. Maybe I just chickened out…maybe I just actually wanted to be able to do things with my husband and kids today…I know it will make it a much slower process, but if I can be a bit more comfortable getting there than maybe it is worth it. We shall see. So glad it has worked for you. That must be such a huge relief. My eyes seem to be ok this morning(I am thinking it is allergy related related as that is another thing that has been acting up, but I will certainly be mindful of any changes…I have read about the eye stuff, and I certainly do not want to have anything serious happen). Anyway, thanks again for your help. We shall see how the lower dose does and how I can progress up:)
I wouldn’t consider it chickening out. If I had known how crappy Topamax was going to make me feel I probably would have done it 12.5mg at a time as well if I had known that was an option No one told me I could do that–in fact I was told NOT to split the pills so I thought I didn’t have that choice.
I changed Nortriptyline dosages all the time and rarely felt anything for more than a day, and even then it was minor at worst. Changing Topamax on the other hand made me feel like I was having a motherload MAV attack everytime I raised the dosage. I don’t think I ever felt worse than I did when I was adjusting my Topamax dosage. So I understand why you were unhappy.
I think you might have been able to make it through if you had gone another day or two, but then you would have had to do this over and over again to get to higher doses, so that probably wasn’t going to work for you anyway. Maybe you will find going up by 12.5mg at a time will work better for you and allow you to function in the rest of your life. Whatever WORKS for you is the right way to do it.
Thanks for your kind words! I am not sure how much of a difference it has made today…maybe slight improvement…hard to tell…when I am laying down in bed, i feel fine…it is just when I am standing or sitting that I start to fee it. We shall see if I can tolerate it or not. Part of me just wants to come off all meds. It is so hard to know what is the most prudent thing to do. Thanks again!
Hi Madcha, I have just seen the GP this past Friday and asked for Topamax, she is consulting with the neuro re dosing but now I see here that it is a sulfa based drug I know I am out of the running!! Big time sulfa allergy.
Hang in there!!
Kathleen
Hey Kathleen…I am going to double check on that sulfa thing. I am very allergic to sulfa as well(hives and fever), but from the research I have done, it does not appear that there is an issue. I asked a pharmacist online who did not see any issues. Someone else posted that they are allergic, and both their pharmacist and dr know, and there was not problem with her taking the topamax. So I would double check. So far, I have not had any reactions, but I am going to check in with my dr, tomorrow. Good luck with whatever you end up taking!
Hey Madcha,
Thanks for that info!! I have not been on the site for a week & a half. Will look into it more, as I have yet to hear anything from the doc on Topamax.
Thanks again!
Thanks to everyone for all of your input. I have been on and off so many meds for my MAV and I am now going on Topamax (at this time will work my way up to 50mg). The best med that worked for me so far was nortriptyline but the side effects got so bad I was weaned off it. Then tried two or three since then, the names are getting lost, but now on to Topamax. Its good to read your stories and situations. Coming from others that are going through the same thing is encouraging. I pray for good results for all of us!