My Topamax Experience

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My Topamax Experience

Post  BaadDawg on Sat Jan 09, 2010 11:18 am

I started Topamax about 5 weeks ago and I have been really happy with the results. I noticed improvements right away. I started at 25 mg and only increased 2 weeks later. I am now at 75mg and will go to 100mg next week. About the only side effect I noticed is slight tingling in my feet. I have not noticed any dopiness. I still get headaches but not as often and they go away much sooner and are not as severe.

I am also on CoeQ10 300mg B2 (400mg) and magnesium (500mg). I was on those before as preventatives and keep taking them now too. I used to be on nadolol which helped somewhat but had to switch to a different beta blocker that did not help my migraines.

I had refused to try Topamax for many years, now I feel like a bit of an idiot for refusing. I sure hope it keeps helping. My neuro has me on an increasing dose of 25mg every 2 weeks up to 400mg. Of course I can stay at any dose I want as long as I find relief. He said that patients of his mostly get maximum relief at either 125mg or 350 to 400mg. He said something about genetic predispositions being the reason for the 2 different dosing success levels.

Some literature says to stop at 200mg if there is no relief of migraine at that dose. I don't know if that is older research and perhaps my neuro has newer info.

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Re: My Topamax Experience

Post  LG on Sat Jan 09, 2010 1:08 pm

I'm so happy that you are finding great success with topamax! Very Happy I hope your great
results continue!

I figure I'd warn you about generics though, I've posted it in a few different topics but in case
you didn't read, I picked up my refill to find that they are different brand then my other refill.
After starting this one, I have been getting migraines like crazy. Just be aware in case you think
topamax isn't working anymore, it may just be the refill you got! Don't loose hope right away Smile
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Re: My Topamax Experience

Post  BaadDawg on Sat Jan 09, 2010 1:23 pm

I never even noticed what the brand was when I first filled the script then after I saw your posts I noticed it was the generic Mylan. I will try to get the brand name when I refill in a few weeks. Typing this with an ice bag on my head which is the only thing I take for pain relief.

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Re: My Topamax Experience

Post  LG on Sat Jan 09, 2010 1:59 pm

Keep in mind Baad, Brand Topamax is VERY expensive without insurance. Even with insurance,
your copay might be crazy. With insurance 120 25mg pills for me would be $70! Without it, it
would be I believe around $300-500 (not sure exactly but yeah that expensive!)

Mylan and Teva are just the makers of different generic brands. That is something you talk
to your pharmacy about, not to your doctor. I believe there are even more than just two
makers of generic topamax.

If Mylan brand generic is working for you, you may want to concider staying on it. Just look at
the trouble I'm going through getting my Teva brand now. I have to wait until Monday to get
a script (if I can even get one) then I have to pay full price for it because my insurance company
says it is too early for a refill since I just got the mylan a week ago! All the while, I'm having these
mind wracking migraines every day that I can't control with pain meds. My doc has no on call or
emergency line so I'm completely stuck with dealing with it. I don't want to see you in a similar
situation so be sure to stock up on your current mylan brand topamax before you experiment with
other brands in case they dont work.

Good luck, and sorry your not feeling well today. I still get plenty of those days too. Ice helps me
a lot as well, and light scents of lavender do wonders. Rest easy, and hopefully tomorrow will
be better.
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Topamax exp

Post  rileyoday on Sat Jan 09, 2010 3:48 pm

I never received alot of relief from Topamax... as we increased dosage every 2 weeks I started forgeting words at the end of sentences.

The Dr. was aware of this side effect and we backed down to 150 for awhile. Hope it continues to help you.

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Re: My Topamax Experience

Post  LG on Sat Jan 09, 2010 4:07 pm

Riley, It took two months before I saw good results from topamax. I did see that my migraines
were less painful immediately, but not by a whole lot. I think if I didn't have M so frequently,
I wouldn't have ever noticed. After two months, the stupidness definitely got better too.

I hope you find relief if not from topamax, from something else. Smile
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top exp

Post  Chinookgrl on Sat Jan 09, 2010 7:12 pm

Just wanted to say thanks lovegia for bringing up the generic concerns, I didn't notice either on any of my refills. When I looked back however my last refill was different and I did have a couple of really bad M's , I had put it down to adjusting to the Topamax but maybe it was the different manufacturer. I will be more cautious in the future. Thanks for the info.
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Re: My Topamax Experience

Post  BaadDawg on Sat Jan 09, 2010 7:33 pm

If you do an internet search of generic topamax and migraine there seem to be a lot of people who are complaining of more migraines than before as soon as they switched from brand name Topamax to the generics. I will be calling my insurance company on Monday telling them my doctor is the one insisting I get the brand name and if they agree and need proof then I will get my neuro to write something. Here is one link to a discussion. I think the generics were only approved in April 2009.

http://www.healthcentral.com/migraine/c/question/32993/69584

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Re: My Topamax Experience

Post  Almostangela on Sat Jan 09, 2010 8:30 pm

So glad to hear of your success. I switched to generic and it didn't make a difference. I was reading the doctors' book in his office with him and it said anything over 100mg didn't have a greater advantage for migraines, but definately, let your neuro lead the way. I've been on it for over a year now and all the side effects have disappeared except for the loss of apetite, but I have stopped losing weight.
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Re: My Topamax Experience

Post  LG on Sun Jan 10, 2010 2:08 am

Baad, just to let you know its not the brand I'm talking about.

I'm talking about two different types of generic. I'm not talking about brand at all. Lets
take brand completely out of the equation here.

I always get generic pills. There are different companies that make generic pills. For example,
two companies are mylan and teva. I like teva, but this time I got mylan. Mylan makes me
go nuts with migraines. There is no cost difference between the two, and there is no difference
in your prescription. Your doctor cannot help you get mylan or teva brand. All you need to do
is tell your pharmacy you prefer whatever brand your on. You can look on your prescription
bottle and read underneath topiramate, usually where it gives you the description of the pills
(I.E White, Round. Reads M11) to find out what brand you are usually given.


However, I have read the discussion you are talking about and agree. I was thinking about
switching myself. I would like to stay on the Teva generic for three months to give it a full
evaluation first because the cost of brand topamax is crazy and I'm not rich. I would recommend the same to anyone I meet. I only have one month to go before I've been on it for three months and if it doesn't work like I would like I will ask for brand topamax to try it out, because
apparently it is supposted to be much more effective. There was even a newspaper article
recently on it, I will try and dig it up.

And NP on bringing this info up guys. Hope it helps! Smile
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Re: My Topamax Experience

Post  Olee on Sun Jan 10, 2010 8:32 am

In the beginning of my Topamax use, which was about 5 years ago, I would get really loopy and dopey. Now days I may have a moment or two but for the most part I'm on even keel and the drug lessens the frequency of the migraines. I have gone off of it a few times over the years and could tell a significant difference, so I know it works for me. It's not a cure by any means, but it helps to control the migraines. I'm currently prescribed 150mg broken up between 3 doses throughout the day. I also use the Topiramate brand.
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Re: My Topamax Experience

Post  hpilgrim on Sun Jan 10, 2010 10:38 pm

I wish I could take it-
I love that it's working for so many of us...

It was not for me - I think I may be sensitive to side effects. I lost a bunch of hair, but the scary thing was the personality change, not for the better at all. I because very aggressive and confrontational, which is not me at all...

Holly
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Re: My Topamax Experience

Post  estre004 on Mon Jan 11, 2010 7:37 am

My experience was the same as Holly's above. Although I think it helped for a few weeks, when I finally did get a migraine, it was way off the charts (didn't think they could ever get worse than what I already experienced). Even with the positive results for a lot of you (and I'm glad it does work for some), it scares me to death. Maybe someone should start a survey for those of you that are taking Topamax and compare generics with those who are loving the drug and those that hate it. Would be very interesting.

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